BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Cure EB - ECPv6.15.14//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-WR-CALNAME:Cure EB X-ORIGINAL-URL:https://cure-eb.org X-WR-CALDESC:Events for Cure EB REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:Europe/London BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20220327T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20221030T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20230326T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20231029T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20240331T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20241027T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20250330T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20251026T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20260329T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20261025T010000 END:STANDARD END:VTIMEZONE BEGIN:VTIMEZONE TZID:UTC BEGIN:STANDARD TZOFFSETFROM:+0000 TZOFFSETTO:+0000 TZNAME:UTC DTSTART:20210101T000000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=Europe/London:20251211T140000 DTEND;TZID=Europe/London:20251211T150000 DTSTAMP:20260407T095129 CREATED:20251003T081730Z LAST-MODIFIED:20251119T174337Z UID:21016-1765461600-1765465200@cure-eb.org SUMMARY:Research the Cure webinar - December 2025 DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=”.vc_custom_1763574179683{background-color: #F2F2F2 !important;}”]Change of date \nDue to unforeseen circumstances\, our webinar with Prof Jakub Tolar is now on Thursday 11th December at 2pm. \nIf you had already registered\, your place has been transferred. We apologise for any inconvenience this may cause. \nRegistration remains open to all.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””] \nImmune & cell therapy for RDEB SCC\nProf Jakub Tolar (University of Minnesota) is joining us to talk about his research into immune and cell therapy for recessive dystrophic EB (RDEB) associated squamous cell carcinoma (SCC). You can read more about this research project here.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column]Register your free place[/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]When?  Thursday 11th December\, 2pm GMT \nWhere? Online – register now \nWho? This free webinar is open to all – EB patients and families\, researchers\, clinicians\, and anyone with an interest in EB. \n  \nPlease note that this a live event only – a recording won’t be shared after the event. \nHosted by Sharmila Collins\, founder of Cure EB\, this is a free event open to all\, but you must register. \nThere will be an opportunity to ask questions\, but you can also submit questions in advance here.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_text_separator title=”Meet the speaker” border=”no”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Prof Jakub Tolar is the dean of the University of Minnesota Medical School and a Distinguished McKnight University Professor in the Department of Pediatrics\, Blood and Marrow Transplant & Cellular Therapy. He is also the vice president for Clinical Affairs at the University of Minnesota\, board chair for University of Minnesota Physicians and co-leader of M Health Fairview\, the joint clinical enterprise among the University of Minnesota Medical School\, University of Minnesota Physicians and Fairview Health Services. An internationally recognized physician and researcher\, Dr. Tolar is known for his care of patients with recessive dystrophic epidermolysis bullosa. His research is focused on developing cellular therapies for rare genetic disorders.[/vc_column_text][/vc_column][/vc_row] URL:https://cure-eb.org/event/researchthecure-dec25/ LOCATION:Online CATEGORIES:Research Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2025/10/251120-Jakub-tolar-webinar.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20251202 DTEND;VALUE=DATE:20251203 DTSTAMP:20260407T095129 CREATED:20250804T152350Z LAST-MODIFIED:20251125T102733Z UID:20911-1764633600-1764719999@cure-eb.org SUMMARY:Butterfly Speaker Lunch DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=”.vc_custom_1761828417290{margin-bottom: 25px !important;}”] \nStephen Mangan in conversation with Hadley Freeman\nTo launch our Big Give Christmas Challenge week we invite you to our fabulous Butterfly Speaker Lunch at the elegant French restaurant\, Orrery\, in the heart of Marylebone on 2nd December. \nWe are thrilled to have Stephen Mangan\, actor\, comedian and children’s author\, in conversation with best-selling author and Sunday Times journalist Hadley Freeman. \nOn arrival\, you will be welcomed with Champagne on the rooftop terrace\, before being treated to a sumptuous and delicious three course lunch\, interspersed with fundraising and fascinating chat. \nWe look forward to welcoming you at 11:45am on Tuesday 2nd December 2025. If you have any questions ahead of booking tickets\, please get in touch with us.[/vc_column_text][vc_column_text css=””] \nPlease note: Online booking closes midnight Thursday. \n\n \n \n [/vc_column_text][vc_column_text css=””]Please note: When purchasing a ticket\, your personal data will be collected in order to facilitate the management of\, and communications ahead of\, the event. Your email address will not be used for further marketing purposes unless you have explicitly asked us to do so\, and from which you can opt out at any time.[/vc_column_text][/vc_column][/vc_row] URL:https://cure-eb.org/event/butterfly-speaker-lunch-2025/ CATEGORIES:Speaker Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2025/08/900x450-2025-Speaker-Lunch-featured-image-2.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20251005T130000 DTEND;TZID=Europe/London:20251005T163000 DTSTAMP:20260407T095129 CREATED:20250120T123722Z LAST-MODIFIED:20250930T084010Z UID:20333-1759669200-1759681800@cure-eb.org SUMMARY:Family Day 2025 DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Cure EB Family Day is a free event for our wonderful EB community to come together\, have fun and catch up on the latest EB research news. \nIf you or a family member have EB\, then join us for lunch\, and then while the adults hear from the EB experts\, the children will be entertained with games and crafts. There will also be plenty of time for tea and cake so that families can catch up with old friends and make some new ones! \n  \nWhen? Sunday 5th October \nWhere? Timber Lodge\, Queen Elizabeth Olympic Park\, London[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_text_separator title=”Book your free tickets” border=”no” background_color=”#1D4289″ title_color=”#FFFFFF”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_raw_html css=””]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[/vc_raw_html][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]We know that London isn’t convenient for everyone\, so we have secured limited funding to help some with access and travel. If you live far away and would like to come\, please do get in touch early\, so as not to miss out.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_text_separator title=”Confirmed speakers” border=”no” background_color=”#1D4289″][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Prof John McGrath  \nJohn is Professor of Molecular Dermatology and Head of the Genetic Skin Disease Unit at King’s College London\, and a Consultant based at Guy’s Hospital in London\, where he is Head of the St John’s Institute of Dermatology. He is an internationally renowned expert in EB\, and a past president of the European Society for Dermatological Research.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Dr Pablo López Balboa \nPablo is a Paediatrician with a special interest in Paediatric Dermatology. In 2021\, he joined the paediatric dermatology team at Great Ormond Street Hospital for Children as a senior clinical research fellow\, focusing on stem-cell therapy and drug repurposing in genodermatoses. His current work centres on rare skin diseases\, biologic therapies\, hair disorders\, and laser treatments.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Dr Rob Hynds \nRob is a biologist at University College London’s Great Ormond Street Institute of Child Health\, where he leads the EpiCENTR research group. His team studies how stem cells and gene therapies can be used to repair and regenerate airways\, with the goal of developing new treatments. He is co-leading a research project to explore a new therapy for airway problems in Junctional EB.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Dr Richard Williams \nRichard is CEO of Healome Therapeutics\, a spin-out company from the University of Birmingham driving the development of more effective\, safer\, and easier to use treatments for ocular surface conditions that can threaten vision. Interests in EB focus on ways of helping maintain functional vision and guide the healing of the surface of the eye while reducing the risk of scarring.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_text_separator title=”Sponsor” border=”no” background_color=”#1D4289″][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/3″][/vc_column][vc_column width=”1/3″][vc_single_image image=”19892″ img_size=”full” css=”” qode_css_animation=””][/vc_column][vc_column width=”1/3″][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern” z_index=”” background_color=”#F2F2F2″][vc_column][vc_column_text css=””] \nButterfly Run 2025\nWhy not join us in the morning for our family friendly Butterfly Run? This accessible event is held at the same venue\, and we are encouraging as many people of all abilities to run\, walk\, wheel or whatever you can do to complete a 1k\, 5k or 10k race.[/vc_column_text][/vc_column][/vc_row] URL:https://cure-eb.org/event/family-day-2025/ CATEGORIES:Family Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2025/08/Family-Day-2025-feature-image-900-x-450-px.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20251005T090000 DTEND;TZID=Europe/London:20251005T130000 DTSTAMP:20260407T095129 CREATED:20250120T123235Z LAST-MODIFIED:20250508T141408Z UID:20328-1759654800-1759669200@cure-eb.org SUMMARY:Butterfly Run 2025 DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Our Butterfly Run is back on Sunday 5th October 2025 at Queen Elizabeth Olympic Park in London. \nBook now![/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Please get in touch (contact@cure-eb.org) if you are interested in sponsoring the event or being one of our charity partners.[/vc_column_text][/vc_column][/vc_row] URL:https://cure-eb.org/event/butterfly-run-2025/ LOCATION:Queen Elizabeth Olympic Park\, London\, E20 1DY CATEGORIES:Sports Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2025/01/BR2025-900x450-2.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20250925T140000 DTEND;TZID=Europe/London:20250925T150000 DTSTAMP:20260407T095129 CREATED:20250711T084817Z LAST-MODIFIED:20250729T105943Z UID:20789-1758808800-1758812400@cure-eb.org SUMMARY:Research the Cure webinar - September 2025 DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Development of a personalized stem cell therapy for RDEB delivered by cell suspension \nProf Ganna (Anya) Bilousova is joining us to talk about the pre-clinical development of a personalized stem cell therapy for recessive dystrophic epidermolysis bullosa delivered via cell suspension.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column]Register your free place[/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]When? Thursday 25th September 2025\, 2pm BST \nWhere? Online – register now \nWho? This free webinar is open to all – EB patients and families\, researchers\, clinicians\, and anyone with an interest in EB.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Please note that this is a live event only – a recording won’t be shared after the event. \nHosted by Sharmila Collins\, founder of Cure EB\, this is a free event open to all\, but you must register. \nThere will be an opportunity to ask questions\, but you can also submit questions in advance here[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_separator type=”normal”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/3″][vc_single_image image=”20797″ css=”” qode_css_animation=””][/vc_column][vc_column width=”2/3″][vc_column_text css=””]Dr. Ganna (Anya) Bilousova (Ph.D.) is an Associate Professor of Dermatology at the University of Colorado Anschutz Medical Campus (UCAMC)\, USA. She received her Bachelor of Science (B.S.) degree in Human Physiology in 2001 at Donetsk National University\, Ukraine\, and her Doctor’s degree (Ph.D.) in Biochemistry in 2007 at the University of Colorado\, USA. Research in her laboratory is focused on studying skin and connective tissue diseases\, such as Epidermolysis Bullosa and Ehlers-Danlos Syndrome and developing therapeutic approaches for these conditions. Dr. Bilousova also directs the Stem Cell Biobank and Disease Modeling Core at the University of Colorado and oversees the generation and genetic engineering of induced pluripotent stem cells (iPSCs) for the research community. Dr. Bilousova collaborates with Dr. Dennis Roop (Ph.D.\, Professor of Dermatology\, UCAMC)\, Dr. Igor Kogut (Ph.D.\, Associate Professor of Dermatology \, UCAMC) and Dr. Anna Bruckner (MD\, Professor of Dermatology\, UCAMC) in developing an iPSC-based therapy for skin diseases.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column]Research the Cure webinar registration[/vc_column][/vc_row] URL:https://cure-eb.org/event/researchthecure-sep25/ LOCATION:Online CATEGORIES:Research Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2025/07/Rtc-25th-September-2025-Ganna-Bilosova.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20250713 DTEND;VALUE=DATE:20250714 DTSTAMP:20260407T095129 CREATED:20250512T125303Z LAST-MODIFIED:20250711T154128Z UID:20537-1752364800-1752451199@cure-eb.org SUMMARY:Brave Wings Festival DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”center” background_image_as_pattern=”without_pattern” z_index=””][vc_column css=”.vc_custom_1747847959854{padding-bottom: 20px !important;}”]Book now[/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column css=”.vc_custom_1747847959854{padding-bottom: 20px !important;}”][vc_column_text css=””] \nJoin us for our Brave Wings Festival on 13th July!\nFamily festival for all ages.\nWe’re taking over the Mills Centre at London’s Highgate School for crafts\, arts\, music\, film and fun. At the end of day join us for live music on the grass\, with face painting\, balloons\, stalls\, food truck\, drinks\, ice creams and other delights![/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern” el_class=”threespc” z_index=””][vc_column width=”1/3″ css=”.vc_custom_1748351839133{margin-right: 10px !important;margin-left: 10px !important;background-color: #AFD136 !important;border-radius: 35px !important;border-color: #FFFFFF !important;}”][vc_column_text css=”” el_class=”ija”] \nCrafty Kids\n4-8yrs\n11am-3pm \nStorytelling / Arts & Crafts / Role Play / Karaoke / Dance / Games / Face Painting / Fun! \nRun by Sharky & George \n\nIncludes access to Live Music \n[/vc_column_text][/vc_column][vc_column width=”1/3″ css=”.vc_custom_1747848594047{margin-right: 10px !important;margin-left: 10px !important;background-color: #F78F1E !important;border-radius: 35px !important;border-color: #FFFFFF !important;}”][vc_column_text css=”” el_class=”ija”] \nFilm Fun\n9-17yrs\n11am-3pm \nPART 1\nMake-up / Photography\nStoryboarding / Costumes \nRun by HVH Arts \nPART 2\nFilming Music Video \nRun by Young Film Academy \n\nIncludes access to Live Music \n[/vc_column_text][/vc_column][vc_column width=”1/3″ css=”.vc_custom_1747848607382{margin-right: 10px !important;margin-left: 10px !important;background-color: #C0529E !important;border-radius: 35px !important;border-color: #FFFFFF !important;}”][vc_column_text css=”” el_class=”ija”] \nLive Music\nAll ages\n3pm-5.30pm \nLive Band / Food Trucks\nPimms Tricycle/ Craft Stalls\nBalloon Fun/ Bubbles\nFace Painting \n[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern” z_index=”” anchor=”Book_Run24″][vc_column][vc_column_text css=””]Date: Sunday 13th July \nTime: 11am-3pm activities\, 3pm-5.30pm live music \nVenue: The Mills Centre\, Highgate School\, 5 Bishops Wood Road\, London N6 4PP[/vc_column_text][vc_empty_space][vc_column_text css=””]Please Note: \n\n\n\nThe Brave Wings Festival is a Family Festival run by Cure EB.  We aim for this day to be accessible to all children.\nIf your child is attending Crafty Kids (11am – 3pm)\, he or she will require an accompanying adult who will be responsible for your child at all times.\nIf your child is attending Film Fun (11am – 3pm) he or she may\, if needs require\, have an accompanying adult present throughout the session (but an adult is not required).  If your child attends Film Fun without an adult but stays for the Live Music session in the afternoon\, please note that he or she will require an accompanying adult present during the Live Music session.\nIf your child is under 16 years and is attending the Live Music session (3pm – 5.30pm) then he or she will require an accompanying adult who will be responsible for your child at all times.\nAn “accompanying adult” is a person over the age of 21 years.\nPlease ensure that your child brings a packed lunch. We kindly request that these packed lunches are nut free.  \nWe will have food trucks on site during the Live Music. If your child has specific food allergies or requirements\, please bring appropriate food for them.  We cannot guarantee that the food purchased from the food trucks will be nut free or that it will meet your child’s particular requirements.\nAs the event will take place partly outdoors\, please check the weather forecast and ensure your child is appropriately dressed.\nPlease note that animals (other than assistance and guide dogs) are not permitted on site.\n\n\n\n[/vc_column_text][vc_empty_space][vc_text_separator title=”Buy Tickets” border=”no”][vc_column_text css=”” el_id=”ticket_inset”]\n \n \n \n [/vc_column_text][vc_column_text css=””]Please note: When purchasing a ticket\, your personal data will be collected in order to facilitate the management of\, and communications ahead of\, the event. Your email address and mobile number will not be used for further marketing purposes unless you have explicitly asked us to do so. Your postal address may be used for occasional future mailings from which you can opt out at any time\, just let us know on contact@cure-eb.org. For more information see our Privacy Policy. [/vc_column_text][vc_empty_space][vc_text_separator title=”Corporate Sponsors” border=”no”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/3″][/vc_column][vc_column width=”1/3″][vc_single_image image=”19892″ img_size=”” alignment=”center” css=”” qode_css_animation=””][/vc_column][vc_column width=”1/3″][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern” el_id=”event-terms” z_index=””][vc_column][vc_separator type=”normal” color=”#D4D4D4F5″ thickness=”2px”]\n \n\n \n Terms & Conditions \n\n\n \n \n \n \n\n\n\n \n [vc_column_text css=””]1. General Admission \n\nThis ticket grants entry to the Brave Wings Festival hosted by Cure EB on Sunday 13 July 2025 at the Mills Centre\, Highgate School.\nEntry is permitted only with a valid ticket.  All attendees\, including children\, must have a ticket unless otherwise stated.\nThese terms and conditions apply to all attendees\, volunteers and staff.\n\n2. Children’s Activities \n\nThe event includes a range of age-appropriate activities for children.  Parental or guardian supervision is required for all children attending the Crafty Kids session and all children under the age of 16 attending the Live Music session.\nDuring both the Crafty Kids and Live Music sessions\, parents or guardians are responsible for the supervision and safety of their children at all times.\nParticipation in children’s activities is at your own risk.  While every effort is made to ensure safety\, Cure EB is not liable for minor injuries or accidents.\nThe children’s activities will be run by trained staff and/or volunteers who have undergone appropriate safeguarding training and Enhanced DBS checks where legally required.\n\n3. Safeguarding and Welfare \n\nCure EB is committed to upholding the highest standards of child protection in line with UK legislation.  All staff and volunteers working directly with children have received safeguarding training in line with Cure EB’s Safeguarding Policy.\nThe event will have a Designated Safeguarding Lead (DSL) present at all times.  If you have any safeguarding concerns during the event\, please report them immediately to a member of staff who will alert the DSL.\n\n4. Health and Safety \n\nCure EB is committed to ensuring a safe environment for all participants\, especially children.  All activities will be risk-assessed and staffed by trained personnel or volunteers.  Music during the Live Music session will be monitored and its volume kept to safe levels.\nAttendees agree to follow all health and safety guidance displayed throughout the venue and given by event staff.\nIf your child has allergies or medical conditions or additional needs\, you should inform a member of staff and/or the person running the session that your child is attending.\nIn the event of an emergency\, the organisers reserve the right to contact medical services and administer any necessary first aid.\n\n5. Behaviour and Conduct \n\nThis is a family-friendly event intended to be accessible to all children.  Aggressive\, disruptive or inappropriate behaviour will result in removal from the venue.\nNo glass\, alcohol or dangerous items may be brought on site.\n\n6. Photography and Media \n\nBy purchasing a ticket\, your consent to photography and videography which may be used for promotional purposes by Cure EB.\nIf you do not wish for you or your child to be photographed\, please inform event staff upon arrival.\n\n7. Tickets\, Refunds and Cancellations \n\nAll ticket sales are final.  No refunds will be issued unless the event is cancelled by Cure EB.\nIn the event of cancellation or postponement\, attendees will be notified by email.\nTickets are non-transferable unless approved by Cure EB.\n\n8. Liability \n\nCure EB\, its staff and volunteers accept no responsibility for loss\, damage or theft of personal belongings.\nAttendance is at your own risk.  While reasonable steps have been taken to ensure a safe and secure environment\, Cure EB shall not be held responsible for any injury or loss unless caused by proven negligence.\n\nBy purchasing a ticket and attending this event\, you agree to comply with these terms and conditions and our Safeguarding Policy.[/vc_column_text] \n[vc_separator type=”normal” color=”#D4D4D4F5″ thickness=”2px”][/vc_column][/vc_row] URL:https://cure-eb.org/event/brave-wings-festival/ LOCATION:Highgate School\, North Road\, London\, N6 4AY CATEGORIES:Family Events ATTACH;FMTTYPE=image/jpeg:https://cure-eb.org/wp-content/uploads/2025/05/thumbnail_BWF-web-banner-v5.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20250619T133000 DTEND;TZID=Europe/London:20250619T143000 DTSTAMP:20260407T095129 CREATED:20250521T132326Z LAST-MODIFIED:20250610T102534Z UID:20558-1750339800-1750343400@cure-eb.org SUMMARY:Family Forum - Foot Hackathon DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]How do you dress feet to try to minimise damage and scarring and to maintain mobility? \nIf you have EB\, or care for someone who does\, please join us for our Foot Hackathon – an opportunity for EB patients and carers to share knowledge and discuss how to manage feet. \nPlease note that this is not medical advice\, but a forum to share what has and hasn’t worked for you/your family member.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]When? Thursday 19th June\, 1.30pm – 2.15pm BST. \nWhere? Online – you can join from anywhere in the world \nPlease note that this is a live event only – a recording won’t be shared after the event. \nThis event is open to all Family Forum members. \n\nIf you are already part of our Family Forum\, you will be emailed a link to register for this free event.\nIf you are not yet a member\, sign up here – it’s free to join.\n\nOur Family Forum is an informal group for EB patients and their families/carers. Visit our Family Forum page for more information.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_text_separator title=”Hosts” border=”no”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/4″][vc_single_image image=”20559″ alignment=”center” css=”” qode_css_animation=””][vc_column_text css=””] \nSharmila Collins is a founder and trustee of Cure EB and mum to 22 year old Sohana \n[/vc_column_text][/vc_column][vc_column width=”1/4″][vc_single_image image=”20560″ alignment=”center” css=”” qode_css_animation=””][vc_column_text css=””] \nKate Gee is Cure EB’s Family Liaison Officer and mum to 13 year old Poppy \n[/vc_column_text][/vc_column][vc_column width=”1/4″][vc_single_image image=”20567″ alignment=”center” css=”” qode_css_animation=””][vc_column_text css=””] \nNatasha Hersham is mum to 2 year old Abe \n[/vc_column_text][/vc_column][vc_column width=”1/4″][vc_single_image image=”19628″ alignment=”center” css=”” qode_css_animation=””][vc_column_text css=””] \nErin Ward is mum to 2 year old Albi \n[/vc_column_text][/vc_column][/vc_row] URL:https://cure-eb.org/event/familyforum-foothackathon/ LOCATION:Online ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2025/05/250619-Foot-Hackathon-feature-image.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20250427 DTEND;VALUE=DATE:20250428 DTSTAMP:20260407T095129 CREATED:20240314T171232Z LAST-MODIFIED:20250130T113012Z UID:19518-1745712000-1745798399@cure-eb.org SUMMARY:London Marathon 2025 DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]The TCS London Marathon is an incredible experience! Taking place in April\, the route takes in many of London’s best landmarks including Buckingham Palace\, the Cutty Sark\, Tower Bridge and Canary Wharf. \nIf you would be interested in running for Cure EB in 2026\, do contact us for more information.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””] \nMeet our marathon runners\n[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/4″][vc_single_image image=”20399″ alignment=”center” css=”” qode_css_animation=””][/vc_column][vc_column width=”3/4″][vc_column_text css=””] \nAndy\nDad of 4 and uncle to Poppy\, who has RDEB\, Andy isn’t going to let a lack of previous running get in his way of completing the marathon. \n“My determination to achieve this goal though\, comes from that fact that any pain I suffer in this process will be a fraction of what EB sufferers face all day\, every day.” \nSponsor Andy[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/4″][vc_single_image image=”20398″ alignment=”center” css=”” qode_css_animation=””][/vc_column][vc_column width=”3/4″][vc_column_text css=””] \nDiana\nNew mum Diana laughs in the face of sleep deprivation and thought she’d add training for a marathon into the mix! \n“I am juggling family life\, work and training for the London marathon 2025! The more I learn about Cure EB\, the more I want to raise” \nSponsor Diana[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/4″][vc_single_image image=”20396″ alignment=”center” css=”” qode_css_animation=””][/vc_column][vc_column width=”3/4″][vc_column_text css=””] \nJames\nGodfather to Poppy\, who has RDEB\, James knows about the non-stop pain of EB and it’s spurring him on to run the marathon for Cure EB this year. \n“For my small part\, I will run this marathon as fast as possible and try and raise as much money as I can to help find a cure so that Poppy and others like her don’t have to suffer.” \nSponsor James[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/4″][vc_single_image image=”20397″ alignment=”center” css=”” qode_css_animation=””][/vc_column][vc_column width=”3/4″][vc_column_text css=””] \nJess\nMum to Fleur\, who has EB\, Jess has very personal reasons for fundraising for Cure EB. \n“Although there’s no cure for EB yet\, charities like Cure EB and us (me\, Jason\, Ozzie & Fleur) really do believe there will be one day very soon and fundraising is one way to get closer to this.” \nSponsor Jess[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/4″][vc_single_image image=”20400″ alignment=”center” css=”” qode_css_animation=””][/vc_column][vc_column width=”3/4″][vc_column_text css=””] \nZach\nSerious runner Zach is ready to smash the London Marathon! \n“Running 26.2 miles is my way of supporting this mission and raising awareness for those battling EB daily. Join me in making a difference—every donation brings us closer to a cure. Together\, we can create hope and healing!” \nSponsor Zach[/vc_column_text][/vc_column][/vc_row] URL:https://cure-eb.org/event/london-marathon-2025/ CATEGORIES:Sports Events ATTACH;FMTTYPE=image/jpeg:https://cure-eb.org/wp-content/uploads/2023/01/London-Marathon-Events-900x450-1-jpg.webp END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20250424T130000 DTEND;TZID=Europe/London:20250424T140000 DTSTAMP:20260407T095129 CREATED:20250327T150405Z LAST-MODIFIED:20250409T131229Z UID:20501-1745499600-1745503200@cure-eb.org SUMMARY:Research the Cure Webinar - April 2025 DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Mission EB \nDr Anna Martinez is joining us to talk about Mission EB\, the first large-scale stem cell clinical trial in EB. \nMission EB was led by Anna at Great Ormond Street Hospital in collaboration with clinicians at Birmingham’s Children’s Hospital. The trial was funded by the National Institute for Health Research (NIHR) in partnership with NHS England and NHS Improvement as well as a grant from Cure EB. \nThe Mission EB study was a double blind\, placebo-controlled\, cross-over study evaluating the safety and efficacy of mesenchymal stromal cells\, or MSCs (a type of stem cell) in 30 pediatric patients in the UK with intermediate or severe RDEB. \nSince study completion\, INmune Bio has made an agreement with GOSH for exclusive commercial use of the data and will market the treatment as CORDStrom. INmune Bio intends to support a 12-month open label study at GOSH\, to include all patients enrolled in the Mission EB study. \nThis is a must-see webinar for EB patients and their loved ones as we hear from Anna about the results and next steps for CORDStrom.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space]Register your free place[vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]When? Thursday 24th April 2025\, 1pm BST \nWhere? Online – register here \nWho? The webinar is open to all – EB patients & families\, researchers\, clinicians\, and anyone with an interest in EB \n  \nPlease note that this is a live event only – a recording won’t be shared after the event.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][vc_separator type=”normal”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””] \n\n\n\n\n\n\n\nHosted by Sharmila Collins\, founder of Cure EB\, this is a free event open to all\, but you must register. \nThere will be an opportunity to ask questions during the webinar\, but please also submit your questions in advance here. \n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n[/vc_column_text][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][vc_separator type=”normal”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/3″][vc_single_image image=”19918″ css=”” qode_css_animation=””][/vc_column][vc_column width=”2/3″][vc_column_text css=””]Anna is a leading paediatric dermatology consultant and National Epidermolysis Bullosa Service lead at Great Ormond Street Hospital in London. She was the lead investigator on Mission EB – the first large-scale stem cell clinical trial for children with EB\, funded by Cure EB in collaboration with the National Institute for Health and Care Research (NIHR).[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space]Research the Cure webinar registration[vc_empty_space][/vc_column][/vc_row] URL:https://cure-eb.org/event/researchthecure-apr25/ CATEGORIES:Research Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2025/03/Research-Webinar-2025-news-research-events.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20241209T130000 DTEND;TZID=Europe/London:20241209T140000 DTSTAMP:20260407T095129 CREATED:20241114T103722Z LAST-MODIFIED:20241118T105314Z UID:20122-1733749200-1733752800@cure-eb.org SUMMARY:Family Forum - Losartan in RDEB with Prof Dimitra Kiritsi DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Prof Dimitra Kiritsi\, Aristotle University of Thessaloniki\, is joining our Family Forum online to talk about the recently published results of the REFLECT study. In this phase 1/2 clinical trial\, losartan was well tolerated by children with RDEB\, and the trial provided preliminary evidence of a reduction in disease burden.  \nJoin Sharmila and Kate as they chat with Dimitra to find out more about the trial and what this means for patients with RDEB. There will be plenty of time to ask questions\, so do join us for our last Family Forum event of 2024.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=”.vc_custom_1731927188995{padding-top: 35px !important;padding-right: 35px !important;padding-bottom: 35px !important;padding-left: 35px !important;background-color: #F0F0F0 !important;border-color: #F0F0F0 !important;}”]When? Monday 9th December\, 1pm (UK time) \nWhere? Online – you can join from anywhere in the world \nPlease note that this is a live event only – a recording won’t be shared after the event. \nThis event is open to all Family Forum members. \n\nIf you are already part of our Family Forum\, you will be emailed a joining link.\nIf you are not yet a member\, sign up here – it’s free to join.\n\n[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Please note that Family Forum is a free\, informal group for EB patients and their families/carers. Visit our Family Forum page for more information.[/vc_column_text][/vc_column][/vc_row] URL:https://cure-eb.org/event/familyforum-dec24/ LOCATION:Online CATEGORIES:Family Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2024/11/Family-Forum-online-December-2024-900x450-1-2.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20241203T114500 DTEND;TZID=Europe/London:20241203T150000 DTSTAMP:20260407T095129 CREATED:20241008T130844Z LAST-MODIFIED:20241010T132252Z UID:20048-1733226300-1733238000@cure-eb.org SUMMARY:Butterfly Speaker Lunch with Mishal Husain and Hadley Freeman DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]To launch our Big Give Christmas Challenge week we invite you to our fabulous Butterfly Speaker Lunch at the elegant French restaurant\, Orrery\, in the heart of Marylebone on 3rd December. \nWe are thrilled to have Mishal Husain\, BBC Radio 4 Today programme presenter and Sunday Times Top Ten best-selling author of ‘Broken Threads’ and ‘The Skills’\, in conversation with Hadley Freeman\, best selling author of ‘House of Glass’ and ‘Good Girls’ and Sunday Times journalist. \nOn arrival\, you will be welcomed with champagne on the rooftop terrace\, before being treated to a sumptuous and delicious three course lunch\, after which we will have the pleasure of listening to Mishal and Hadley converse.[/vc_column_text][vc_gallery type=”image_grid” images=”20061\,20062\,20067\,20068\,20071\,20063\,20081\,20083″ css=”” column_number=”4″ grayscale=”no” images_space=”gallery_with_space”][vc_column_text css=””]We look forward to welcoming you at 11:45am on Tuesday 3rd December 2024. If you have any questions ahead of booking tickets\, please get in touch with us at events@cure-eb.org.[/vc_column_text][vc_raw_html css=””]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[/vc_raw_html][vc_column_text css=””]Please note: When purchasing a ticket\, your personal data will be collected in order to facilitate the management of\, and communications ahead of\, the event. Your email address and mobile number will not be used for further marketing purposes unless you have explicitly asked us to do so. Your postal address may be used for occasional future mailings from which you can opt out at any time\, just let us know on contact@cure-eb.org.[/vc_column_text][/vc_column][/vc_row] URL:https://cure-eb.org/event/butterfly-speaker-lunch-2024/ LOCATION:Orrery\, 55 Marylebone High Street\, London\, W1U 5RB\, United Kingdom CATEGORIES:Brunch Club,Speaker Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2024/10/Speaker-Lunch-header-900x450-1.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20241118T123000 DTEND;TZID=Europe/London:20241118T133000 DTSTAMP:20260407T095129 CREATED:20240912T095131Z LAST-MODIFIED:20241118T105405Z UID:19904-1731933000-1731936600@cure-eb.org SUMMARY:Research the Cure Webinar – November 2024 DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””] \nThank you to Chiesi for the provision of an arm’s length educational grant to support this webinar series. \n[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Gene editing \nDr Joanna Jackow\, King’s College London\, will be joining us for our November webinar to talk about her gene editing research and it’s potential for EB. \nThe webinar is free to join – click here to register your place. \nPlease note that this is a live event only – a recording won’t be shared after the event.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space]Register your free place[vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””] \n\n\n\n\n\n\n\nHosted by Sharmila Collins\, founder of Cure EB\, this is a free event open to all\, but you must register. \nThere will be an opportunity to ask questions during the webinar\, but please also submit your questions in advance here. \n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n[/vc_column_text][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/3″][vc_single_image image=”19354″ css=”” qode_css_animation=””][/vc_column][vc_column width=”2/3″][vc_column_text css=””]Joanna is a lecturer at the St. John’s Institute of Dermatology\, King’s College London. She has extensive experience in EB gene therapy and gene editing applications. \nRead about some of Joanna’s current research\, funded by Cure EB: \n\nEditing of RDEB fibroblasts\nPASTE gene therapy in DEB\n\n[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space]Research the Cure webinar registration[vc_empty_space][/vc_column][/vc_row] URL:https://cure-eb.org/event/researchthecure-nov24/ LOCATION:Online ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2024/09/Research-the-Cure-Nov-24-webinar-news-research-events-1.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20240929T130000 DTEND;TZID=Europe/London:20240929T160000 DTSTAMP:20260407T095129 CREATED:20240501T111647Z LAST-MODIFIED:20240926T140717Z UID:19572-1727614800-1727625600@cure-eb.org SUMMARY:Cure EB Family Day 2024 DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Tickets are no longer available to pre-book. Please email contact@cure-eb.org to enquire about additional spaces.[/vc_column_text][vc_empty_space][vc_column_text css=””]If you or a family member have EB\, then join us for our Family Day Sunday 29th September at the Queen Elizabeth Olympic Park in London! \nCure EB Family Day is a free event for EB families to connect\, have fun\, and catch up on the latest EB research news. \nJoin us for lunch\, and then while the adults hear from EB experts\, the children will be entertained with games and crafts. There will also be plenty of time for tea and cake so that families can catch up with old friends and make some new ones![/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]We know that London isn’t convenient for everyone\, so we have secured limited funding to help some with access and travel. If you live far away and would like to come please do get in touch early\, so as not to miss out.[/vc_column_text][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_text_separator title=”Confirmed speakers” border=”no”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]We’re delighted to have the following speakers joining us at Family Day:[/vc_column_text][vc_empty_space][vc_column_text css=””]Prof John McGrath \nProfessor of Molecular Dermatology and head of the Genetic Skin Disease Group\, St John’s Institute of Dermatology\, King’s College London.[/vc_column_text][vc_empty_space][vc_empty_space][vc_column_text css=””]Dr Joanna Jacków \nLecturer in Molecular Dermatology & Therapeutics\, St John’s Institute of Dermatology\, King’s College London.[/vc_column_text][vc_empty_space][vc_empty_space][vc_column_text css=””]Dr Anna Martinez \nPaediatric dermatology consultant and National Epidermolysis Bullosa Service Lead at Great Ormond Street Hospital\, London.[/vc_column_text][vc_empty_space][vc_empty_space][vc_column_text css=””]Meena Arora \nVP Global Medical Affairs and Research & Development at Traw Pharma\, where she is working on drug development in RDEB associated squamous cell carcinoma.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern” z_index=”” anchor=”Book_FD24″][vc_column][vc_empty_space] URL:https://cure-eb.org/event/family-day-2024/ CATEGORIES:Family Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2024/05/Family-Day-2024-feature-image-900x450-NEW-DATE.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20240929 DTEND;VALUE=DATE:20240930 DTSTAMP:20260407T095129 CREATED:20240207T130309Z LAST-MODIFIED:20241007T131917Z UID:19445-1727568000-1727654399@cure-eb.org SUMMARY:Butterfly Run 2024 DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””] \n\n\n\n\n\n\n\nIt’s time to fly!\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nCure EB’s Butterfly Run is a celebration of inclusivity taking place at the Queen Elizabeth Olympic Park in London on Sunday 29th September 2024 (previously advertised as Sunday 22nd). \nWe are encouraging as many people of all abilities to run\, walk\, wheel\, or whatever you can do to complete a 1k\, 5k or 10k race. \n\n\n\n\n\n\n\n[/vc_column_text][vc_empty_space][vc_column_text css=””]Advanced booking for this event has now closed. However\, you can book tickets on the day!  \nOn the day participants just need to arrive at 9.30am to pay and register.  \nTickets cost between £10 and £25. [/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space]\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n We had a blast! Such a lovely event. Great to catch up and put our feet to good use! \n \n \n 2023 Butterfly Run participant \n \n \n \n \n[vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern” z_index=”” anchor=”Book_Run24″][vc_column][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern” z_index=”” anchor=”Book_Run24″][vc_column][vc_empty_space][vc_text_separator title=”Corporate Sponsors” border=”no”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/3″][/vc_column][vc_column width=”1/3″][vc_single_image image=”19892″ img_size=”full” alignment=”center” css=”” qode_css_animation=””][/vc_column][vc_column width=”1/3″][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/2″][vc_single_image image=”19896″ img_size=”full” alignment=”center” css=”” qode_css_animation=””][/vc_column][vc_column width=”1/2″][vc_single_image image=”19893″ img_size=”full” alignment=”center” css=”” qode_css_animation=””][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern” z_index=”” anchor=”Book_Run24″][vc_column][vc_empty_space][vc_text_separator title=”Charity Partners” border=”no”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/2″][vc_single_image image=”19897″ img_size=”full” alignment=”center” css=”” qode_css_animation=””][/vc_column][vc_column width=”1/2″][vc_single_image image=”19894″ img_size=”full” alignment=”center” css=”” qode_css_animation=””][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern” z_index=”” background_color=”#f6f6f6″][vc_column][vc_column_text css=””] \nCure EB Family Day 2024\nIf you or a family member have EB\, why not stay for our Family Day – places are free\, but you need to register.[/vc_column_text][/vc_column][/vc_row] URL:https://cure-eb.org/event/butterfly-run-2024/ LOCATION:Queen Elizabeth Olympic Park\, London\, E20 1DY CATEGORIES:Family Events,Sports Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2024/02/Butterfly-Run-2024-feature-image-900x450-NEW-DATE.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20240912T123000 DTEND;TZID=Europe/London:20240912T133000 DTSTAMP:20260407T095129 CREATED:20240723T080648Z LAST-MODIFIED:20241030T155541Z UID:19703-1726144200-1726147800@cure-eb.org SUMMARY:Research the Cure Webinar – September 2024 DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Thank you to Chiesi for the provision of an arm’s length educational grant to support this webinar series.[/vc_column_text][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Novel therapeutic approach to cure severe dystrophic epidermolysis bullosa \nIn our second webinar of 2024\, Prof Katsuto Tamai\, Osaka University\, will be joining us to talk about his work with gene modified blister-fluid mesenchymal stromal cells for RDEB. \nThe webinar is free to join\, but you must register.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Hosted by Sharmila Collins\, founder of Cure EB\, this is a free event open to all\, but you must register. \nThere will be an opportunity to ask questions during the webinar\, but please also submit your questions in advance here.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space]Register your free place[/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_text_separator title=”About our speaker” border=”no”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/3″][vc_single_image image=”19715″ css=”” qode_css_animation=””][/vc_column][vc_column width=”2/3″][vc_column_text css=””]Prof Katsuto Tamai is a Professor in the Department of Stem Cell Therapy Science at Osaka University\, and Director and Chief Scientific Officer of Stemrim\, a biotechnology company.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space]Research the Cure webinar registration[/vc_column][/vc_row] URL:https://cure-eb.org/event/researchthecure-sep24/ CATEGORIES:Research Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2024/07/Research-the-Cure-Sep-24-webinar-news-research-events.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20240709T200000 DTEND;TZID=Europe/London:20240709T210000 DTSTAMP:20260407T095129 CREATED:20240619T134907Z LAST-MODIFIED:20240619T134907Z UID:19672-1720555200-1720558800@cure-eb.org SUMMARY:Family Forum - Hand Hackathon DESCRIPTION:How do you dress your hands to try to minimise scarring\, contraction and damage? \nIf you have EB\, or care for someone who does\, join us for our Hand Hackathon where we can all share our knowledge of how we manage hands. \nPlease note that this is not medical advice\, but a forum to share what has and hasn’t worked for you/your family member. \n  \nWhen? Tuesday 9th July\, 8pm (UK time) \nWhere? Online – you can join from anywhere in the world. \nThis event is open to all Family Forum members. \n\nIf you are already part of our Family Forum\, you will be emailed a joining link.\nIf you are not yet a member\, sign up here – it’s free to join.\n\nPlease note that Family Forum is an informal group for EB patients and their families/carers. Visit our Family Forum page for more information. URL:https://cure-eb.org/event/family-forum-hand-hackathon/ LOCATION:Online CATEGORIES:Family Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2024/06/FF-Hand-Hackathon-July-2024-900x450-1.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20240620T130000 DTEND;TZID=Europe/London:20240620T140000 DTSTAMP:20260407T095129 CREATED:20240530T110427Z LAST-MODIFIED:20240530T110427Z UID:19604-1718888400-1718892000@cure-eb.org SUMMARY:Research the Cure Webinar - June 2024 DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Dr Ciro Chiappini joins us for our next Research the Cure webinar to talk about using nanoneedles to deliver treatments in EB. \nCiro was one of the lead researchers on the Cure EB funded Nanocol project\, which looked at improving RDEB wound healing through the use of bandages with nanoneedles to insert a functional version of the Collagen VII gene directly inside the skin cells.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column]Register now[/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Hosted by Sharmila Collins\, founder of Cure EB\, this is a free event open to all\, but you must register. \nThere will be an opportunity to ask questions during the webinar\, but please also submit questions in advance here.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column]Research the Cure webinar registration[/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_text_separator title=”About our speaker” border=”no”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Ciro is a Senior Lecturer in Nanomaterials and Biointerfaces at King’s College London and one of the lead researchers on the Nanocol project. His research blends nanotechnology\, bioengineering and cell biology to develop new solutions for advanced therapies.[/vc_column_text][/vc_column][/vc_row] URL:https://cure-eb.org/event/research-the-cure-jun24/ LOCATION:Online CATEGORIES:Research Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2024/05/Research-Webinar-June-2024-website-feature-image.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20240516T190000 DTEND;TZID=Europe/London:20240517T000000 DTSTAMP:20260407T095129 CREATED:20231004T094609Z LAST-MODIFIED:20240208T185317Z UID:19075-1715886000-1715904000@cure-eb.org SUMMARY:Silver Butterfly Dinner DESCRIPTION:Our biannual fundraising event\, the Silver Butterfly Dinner\, is on Thursday 16th May 2024. \nSave the date for a night of champagne\, dinner\, entertainment\, and auctions! \nEmail us for more information about tickets and tables. URL:https://cure-eb.org/event/silver-butterfly-dinner-2024/ ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2023/10/2024-RIBA-Events-900x450px-Frame.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20240421 DTEND;VALUE=DATE:20240422 DTSTAMP:20260407T095129 CREATED:20240314T170607Z LAST-MODIFIED:20240314T171334Z UID:19515-1713657600-1713743999@cure-eb.org SUMMARY:London Marathon 2024 DESCRIPTION:Registration is now closed for this year’s TCS London Marathon. \nHowever\, three amazing runners are taking on the 26 mile challenge for us on 21 April 2024\, find out how to support them below! \n\nRosie Megaw\nJoe Joseph\nDaniela Jancikova\n\nIf you would be interested in running next year\, you can register your interest by emailing us. URL:https://cure-eb.org/event/london-marathon-2024/ CATEGORIES:Sports Events ATTACH;FMTTYPE=image/jpeg:https://cure-eb.org/wp-content/uploads/2023/01/London-Marathon-Events-900x450-1-jpg.webp END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20231205T200000 DTEND;TZID=Europe/London:20231205T210000 DTSTAMP:20260407T095129 CREATED:20231123T101811Z LAST-MODIFIED:20231123T124532Z UID:19243-1701806400-1701810000@cure-eb.org SUMMARY:Family Forum - All I Want for Christmas is a Cure DESCRIPTION:Join us for our last Family Forum event of the year to find out more about what we are working on at Cure EB and let’s have an informal chat about EB research generally. \nHosted by Cure EB founder\, Sharmila\, and Community Liaison Officer\, Kate. Come and ask questions\, have a moan about how long it takes to get research going\, tell us your concerns and what’s on your EB wish list! \n  \nWhen? Tuesday 5th December\, 8pm (UK time) \nWhere? Online – you can join from anywhere in the world. \nThis event is open to all Family Forum members. \n\nIf you are already part of our Family Forum\, you will be emailed a joining link.\nIf you are not yet a member\, sign up here – it’s free to join.\n\n  \nPlease note that Family Forum is an informal group for EB patients and their families/carers. Visit our Family Forum page for more information. URL:https://cure-eb.org/event/family-forum-all-i-want-for-christmas-is-a-cure/ LOCATION:Online CATEGORIES:Family Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2023/11/All-I-Want-for-Christmas-is-a-Cure-900-x-450-px.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20231128 DTEND;VALUE=DATE:20231129 DTSTAMP:20260407T095129 CREATED:20231004T095537Z LAST-MODIFIED:20231030T121412Z UID:19083-1701129600-1701215999@cure-eb.org SUMMARY:Butterfly Brunch with Hadley Freeman & Amelia Gentleman DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text]Our Butterfly Brunch is returning for the first time since the pandemic\, and we would love for you to join us in London for another stunning speaker event.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=”.vc_custom_1697634638650{padding-top: 10px !important;padding-right: 10px !important;padding-bottom: 10px !important;padding-left: 10px !important;background-color: #f7f7f7 !important;}”] \nAt Orrery Restaurant\, in the heart of London’s Marylebone \n55 Marylebone High Street\, W1U 5RB \n11.45am to 3pm on Tuesday 28th November 2023 \n[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text]Enjoy a glass of fizz on the rooftop terrace\, followed by a three-course lunch and a fascinating conversation with Hadley and Amelia. They will also be signing copies of their books – ‘Good Girls: A story and study of anorexia’ and ‘The Windrush Betrayal: Exposing the Hostile Environment‘. \nA wonderful opportunity to ask our speakers any burning questions\, learn more about how you can double your impact with The Big Give Christmas challenge and stand to receive a generous raffle prize.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/4″][vc_single_image image=”19208″ img_size=”” qode_css_animation=””][/vc_column][vc_column width=”3/4″][vc_column_text]Hadley Freeman is a staff writer for The Sunday Times and previously spent more than two decades at The Guardian. Her most recent books include ‘House of Glass’ and ‘Good Girls’.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/4″][vc_single_image image=”19209″ img_size=”” qode_css_animation=””][/vc_column][vc_column width=”3/4″][vc_column_text]Amelia Gentleman\, is a reporter for the Guardian. She was named journalist of the year in 2019 for her investigations into the Windrush scandal\, and also won the Paul Foot award and an Amnesty prize for the reporting. Her book ‘The Windrush Betrayal\, Exposing the Hostile Environment’ was shortlisted for the 2020 Orwell book prize. Amelia previously reported from Paris and Moscow for the Guardian and from Delhi for the New York Times.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_text_separator title=”BOOK YOUR TICKETS” border=”no”][vc_raw_html]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[/vc_raw_html][vc_column_text css=”.vc_custom_1698234640259{padding-top: 20px !important;}”]Please note: When purchasing a ticket\, your personal data will be collected in order to facilitate the management of\, and communications ahead of\, the event. Your email address and mobile number will not be used for further marketing purposes unless you have explicitly asked us to do so. Your postal address may be used for occasional future mailings from which you can opt out at any time\, just let us know on contact@cure-eb.org.[/vc_column_text][/vc_column][/vc_row] URL:https://cure-eb.org/event/butterfly-brunch-2023/ CATEGORIES:Speaker Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2023/10/Butterfly-Brunch-2023-Event-Banner-Image-900x450-2.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20231109T131500 DTEND;TZID=Europe/London:20231109T140000 DTSTAMP:20260407T095129 CREATED:20231019T111356Z LAST-MODIFIED:20231024T141003Z UID:19150-1699535700-1699538400@cure-eb.org SUMMARY:Research the Cure webinar DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text] \nResearch the Cure – EB-associated Squamous Cell Carcinoma\nIn our final Research the Cure webinar of the year\, Prof. Andrew South\, Thomas Jefferson University\, is joining us to talk about EB-associated squamous cell carcinoma (SCC).[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column]Register now for the Research the Cure Webinar[/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text]Not all EB patients will get cancer. However\, in patients with Recessive Dystrophic EB it is the leading cause of premature death. And patients with Dominant Dystrophic EB\, generalized Junctional EB and Kindler Syndrome are at an increased risk of SCC. \nTherefore\, while we search for a cure\, we also need to search for treatments to prevent and slow the progression of EB-associated SCC. \nFor more than a decade\, the South lab has been researching EB-associated SCC and we are delighted to have Andy joining us for our November webinar. \nThere will be an opportunity to ask questions during the webinar\, but please also submit questions in advance here. \nOur research webinars are free to join and open to all\, but you must register.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_text_separator title=”Guest speaker” border=”no”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/4″][vc_single_image image=”17978″ qode_css_animation=””][/vc_column][vc_column width=”3/4″][vc_column_text]Prof Andrew South is Associate Professor in the Department of Dermatology & Cutaneous Biology\, Thomas Jefferson University\, Philadelphia. He is a molecular biologist studying squamous cell carcinoma\, particularly those arising in individuals with genetic predisposition to progressive disease.[/vc_column_text][/vc_column][/vc_row] URL:https://cure-eb.org/event/research-the-cure-nov23/ LOCATION:Online CATEGORIES:Research Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2023/10/November-2023-webinar.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20230924 DTEND;VALUE=DATE:20230925 DTSTAMP:20260407T095129 CREATED:20230227T101028Z LAST-MODIFIED:20230921T133017Z UID:18457-1695513600-1695599999@cure-eb.org SUMMARY:Cure EB Family Day 2023 DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column]Registration for this event has now closed. [/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text]If you or a family member have EB\, then join us for our Family Day Sunday 24th September at the Queen Elizabeth Olympic Park in London! \nCure EB Family Day is for EB families to connect\, have fun\, and catch up on the latest EB research news. \nJoin us for lunch\, and then while the adults hear from EB experts\, the children will be entertained with games and crafts. There will also be plenty of time for tea and cake so that families can catch up with old friends and make some new ones! \nRegistration for this event is now closed.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_text_separator title=”Confirmed speakers” border=”no”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/4″][vc_single_image image=”18070″ qode_css_animation=”” css=”.vc_custom_1694079666270{padding-bottom: 15px !important;}”][vc_single_image image=”18597″ qode_css_animation=”” css=”.vc_custom_1694079677250{padding-bottom: 15px !important;}”][vc_single_image image=”18909″ qode_css_animation=”” css=”.vc_custom_1695210432542{padding-bottom: 15px !important;}”][vc_single_image image=”18947″ qode_css_animation=”” css=”.vc_custom_1695210441153{padding-bottom: 15px !important;}”][vc_single_image image=”18946″ qode_css_animation=”” css=”.vc_custom_1695210449389{padding-bottom: 15px !important;}”][/vc_column][vc_column width=”3/4″][vc_column_text]We’re delighted to have the following experts joining us at Family Day: \nProf John McGrath \nProfessor of Molecular Dermatology and head of the Genetic Skin Disease Group\, St John’s Institute of Dermatology\, King’s College London. \nDr Joanna Jacków \nLecturer in Molecular Dermatology & Therapeutics\, St John’s Institute of Dermatology\, King’s College London. \nDr Emanuel Rognoni \nLecturer\, Centre for Cell Biology and Cutaneous Research\, Blizard Institute\, Queen Mary University of London. \nDr Matthias Titeux \nResearcher\, Genetic Skin Diseases laboratory\, Imagine Institute\, Paris. \nDr Ciro Chiappini \nSenior Lecturer in Nanomaterials and Biointerfaces\, King’s College London. \n[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_separator type=”normal”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text]If you have any questions about Family Day\, please contact kate@cure-eb.org[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text]You may also want to join us in the morning for our Butterfly Run – find out more.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text]If you would like to keep up to date with EB research and our search for a cure\, why not join our Family Forum?[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_text_separator title=”Event Sponsors” border=”no”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text]Thank you to our sponsors for supporting Family Day 2023![/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/4″][vc_single_image image=”17417″ img_size=”full” qode_css_animation=””][/vc_column][vc_column width=”1/4″][vc_single_image image=”17419″ img_size=”full” qode_css_animation=””][/vc_column][vc_column width=”1/4″][vc_single_image image=”17418″ img_size=”full” qode_css_animation=””][/vc_column][vc_column width=”1/4″][/vc_column][/vc_row] URL:https://cure-eb.org/event/cure-eb-family-day-2023/ LOCATION:Queen Elizabeth Olympic Park\, London\, E20 1DY CATEGORIES:Family Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2023/02/Family-Day-2023-900-×-450px.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20230924 DTEND;VALUE=DATE:20230925 DTSTAMP:20260407T095129 CREATED:20230223T132642Z LAST-MODIFIED:20230921T091241Z UID:18444-1695513600-1695599999@cure-eb.org SUMMARY:Butterfly Run 2023 DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern” z_index=””][vc_column]Advance booking has now closed.A few tickets will be available on the day\, priced between £10 and £25 [/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text]It’s Time to fly! \nCure EB’s Butterfly Run is a celebration of inclusivity taking place at the Olympic Park in London on Sunday 24th September 2023. \nWe are encouraging as many people of all abilities to run\, walk\, wheel\, or whatever you can do to complete a 1k\, 5k or 10k race.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text]Advance booking for the Butterfly Run has now closed. \nHowever\, a few tickets will be available on the day\, priced at \n\n10k – £25\n5k adult (age 13 & older) – £20\n5k child (age 12 & under) – £15\n1k fun run – £10\n\nIf you would like to join us\, registration opens at 9.30am outside the Timber Lodge Café in the Queen Elizabeth Olympic Park (1A Honor Lea Avenue\, London\, E20 1DY – view map). \n  \n[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text]Race details \nThe 10k race is open to anyone age 13 and over; the 5k and 1k are open to all ages. \nEntry for the 1k fun run is per race number only; so if you are only running alongside your child to support them\, you do not need to buy an additional entry. \nAll entrants will receive a Butterfly Run race t-shirt\, race number\, and finisher medal. \nRaces are time-chipped so it’s perfect if you’re aiming for your PB\, but it’s also a great atmosphere if you just want a great run with your family or friends. Book your place now! \nTimings \nRegistration opens at 9.30am at Timber Lodge\, E20 1DY – please make sure you register and collect your Butterfly Run race pack when you arrive at the venue. \nOur first race is the 1k Fun Run\, setting off at 10.30am. \nThe 5k and 10k runs start together at 11am\, with the 10K completing two laps of the course. \nThere will also be a free 100m dash for the kids\, after the 1k has finished\, but before the 5k and 10k runs start. No registration is required for this – just listen out for the announcements on the PA system if your child would like to take part in this. \nPrize giving will be after all races are complete. \n[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column] URL:https://cure-eb.org/event/butterfly-run-2023/ LOCATION:Queen Elizabeth Olympic Park\, London\, E20 1DY CATEGORIES:Sports Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2023/02/Butterfly-Run-2023-900x450-1.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20230713T200000 DTEND;TZID=Europe/London:20230713T210000 DTSTAMP:20260407T095129 CREATED:20230626T130653Z LAST-MODIFIED:20230626T134516Z UID:18756-1689278400-1689282000@cure-eb.org SUMMARY:Focus on B-VEC - Family Forum\, 13th July DESCRIPTION:For our first online Family Forum get together\, we are delighted to have Suma Krishnan\, Founder and President\, Research & Development at Krystal Biotech and Peter Marinkovich\, Associate Professor of Dermatology at Stanford University and primary investigator of the GEM-3 study\, joining us to talk about B-VEC (Vyjuvek)\, the FDA-approved gene therapy gel for dystrophic EB. \nSuma and Peter will present\, and there will be plenty of time for your questions. \n\n\nWhen? Thursday 13th July\, 8pm (UK time) \n\n\nWhere? Online – you can join from anywhere in the world. \nFamily Forum members will be sent an invite.\nIf you aren’t a member of our Family Forum yet\, sign up here – it’s free to join. URL:https://cure-eb.org/event/family-forum-13th-july-b-vec/ ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2023/06/Family-Forum-June-2023-online-get-together.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20230518T133000 DTEND;TZID=Europe/London:20230518T141500 DTSTAMP:20260407T095129 CREATED:20230427T110127Z LAST-MODIFIED:20230510T132636Z UID:18621-1684416600-1684419300@cure-eb.org SUMMARY:Research the Cure Webinar DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text]Be Prepared! \nIn our second webinar of 2023\, we will be joined by Prof John McGrath and Prof Jakub Tolar to discuss what you\, as a patient or carer\, need in your EB toolkit in preparation for clinical trials. \nThere will be an opportunity to ask questions\, but you can also submit questions in advance here. \nThe webinar is free to join – click here to register your place.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/3″][vc_single_image image=”18070″ qode_css_animation=””][/vc_column][vc_column width=”2/3″][vc_column_text]Prof John McGrath is Professor of Molecular Dermatology and Head of the Genetic Skin Disease Unit at King’s College London\, and a Consultant based at Guy’s Hospital in London\, where he is Head of the St John’s Institute of Dermatology. He is an internationally renowned expert in EB.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/3″][vc_single_image image=”17968″ qode_css_animation=””][/vc_column][vc_column width=”2/3″][vc_column_text]Prof Jakub Tolar is Dean of the University of Minnesota Medical School and a Professor in the Department of Paediatric Blood and Marrow Transplant and Cellular Therapy. He is an internationally recognised EB researcher and physician.[/vc_column_text][/vc_column][/vc_row] URL:https://cure-eb.org/event/research-the-cure-webinar-may23/ LOCATION:Online CATEGORIES:Research Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2023/04/May-2023-webinar.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20230514 DTEND;VALUE=DATE:20230521 DTSTAMP:20260407T095129 CREATED:20230510T095440Z LAST-MODIFIED:20230510T100751Z UID:18671-1684022400-1684627199@cure-eb.org SUMMARY:Radio 4 Appeal DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=”.vc_custom_1683713268847{padding-bottom: 20px !important;}”]We will be the featured BBC Radio 4 Appeal charity\, spotlighting EB nationwide and the research for treatments which is at the heart of our mission. The appeal will be broadcast on Sunday 14th May at 7.54am and 9.25pm and Thursday 18th May at 3.27pm.[/vc_column_text]OUR APPEAL[/vc_column][/vc_row] URL:https://cure-eb.org/event/radio-4-appeal/ ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2023/04/R4-Appeal-News-Image-2023.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20230423 DTEND;VALUE=DATE:20230424 DTSTAMP:20260407T095129 CREATED:20230302T101708Z LAST-MODIFIED:20230424T111732Z UID:18473-1682208000-1682294399@cure-eb.org SUMMARY:London Marathon 2023 DESCRIPTION:Registration is now closed for this year’s TCS London Marathon. \nHowever\, three amazing runners are taking on the 26 mile challenge for us on 23 April 2023\, find out how to support them below! \n\nJohn Halliwell\nElspeth West\nNicholas Crowson\n\nIf you would be interested in running next year\, you can register your interest by emailing us. URL:https://cure-eb.org/event/london-marathon-2023/ CATEGORIES:Sports Events ATTACH;FMTTYPE=image/jpeg:https://cure-eb.org/wp-content/uploads/2023/01/London-Marathon-Events-900x450-1-jpg.webp END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20230227T123000 DTEND;TZID=Europe/London:20230227T131500 DTSTAMP:20260407T095129 CREATED:20230215T135135Z LAST-MODIFIED:20230223T133604Z UID:18422-1677501000-1677503700@cure-eb.org SUMMARY:Research the Cure Webinar DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text]In the lead-up to Rare Disease Day\, join us on Monday 27th February for the first of our lunchtime Research Webinars. \nProf John McGrath will be joining us to talk about the current EB research landscape. \nThe webinar is free to join – click here to register your place.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/4″][vc_single_image image=”18070″ qode_css_animation=””][/vc_column][vc_column width=”3/4″][vc_column_text]Prof John McGrath is Professor of Molecular Dermatology and Head of the Genetic Skin Disease Unit at King’s College London\, and a Consultant based at Guy’s Hospital in London\, where he is Head of the St John’s Institute of Dermatology. He is an internationally renowned expert in EB.[/vc_column_text][/vc_column][/vc_row] URL:https://cure-eb.org/event/research-the-cure-webinar-feb23/ LOCATION:Online CATEGORIES:Research Events ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2023/02/Research-the-Cure-Research-Webinar-Feb-23-website-image.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20220925 DTEND;VALUE=DATE:20220926 DTSTAMP:20260407T095129 CREATED:20220729T095610Z LAST-MODIFIED:20220905T095449Z UID:15989-1664064000-1664150399@cure-eb.org SUMMARY:Cure EB Family Day DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text]Our Cure EB Family Day is a chance for EB families to connect with each other\, while catching up on the latest EB research news. After a hiatus of three years due to the pandemic\, we are delighted to have an opportunity to get our community back together. \nWhen? Sunday 25th September 2022\, 1pm – 5pm \nWhere? Timber Lodge\, Olympic Park\, London \nWhat? Lunch\, followed by an afternoon finding out about the latest EB research and connecting with other EB families\, while our children are entertained by the wonderful Sharky & George. \nIf you have any questions please email Kate\, our community liaison officer. \n[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column]Book Now[/vc_column][/vc_row] URL:https://cure-eb.org/event/cure-eb-family-day/ ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2022/07/900x450.png END:VEVENT END:VCALENDAR