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DTSTART;TZID=Europe/London:20251005T130000
DTEND;TZID=Europe/London:20251005T163000
DTSTAMP:20260530T131459
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;VALUE=DATE:20250713
DTEND;VALUE=DATE:20250714
DTSTAMP:20260530T131459
CREATED:20250512T125303Z
LAST-MODIFIED:20260528T124131Z
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:20241209T130000
DTEND;TZID=Europe/London:20241209T140000
DTSTAMP:20260530T131459
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:20240929T130000
DTEND;TZID=Europe/London:20240929T160000
DTSTAMP:20260530T131459
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:20260530T131459
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:20240709T200000
DTEND;TZID=Europe/London:20240709T210000
DTSTAMP:20260530T131459
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:20231205T200000
DTEND;TZID=Europe/London:20231205T210000
DTSTAMP:20260530T131459
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:20230924
DTEND;VALUE=DATE:20230925
DTSTAMP:20260530T131459
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
END:VCALENDAR