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DTSTART;VALUE=DATE:20231128
DTEND;VALUE=DATE:20231129
DTSTAMP:20260502T142900
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:20260502T142900
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:20260502T142900
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:20260502T142900
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:20260502T142900
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:20260502T142900
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:20260502T142900
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:20260502T142900
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:20260502T142900
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:20260502T142900
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
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220925
DTEND;VALUE=DATE:20220926
DTSTAMP:20260502T142900
CREATED:20220729T095349Z
LAST-MODIFIED:20220908T125029Z
UID:15985-1664064000-1664150399@cure-eb.org
SUMMARY:Cure EB Butterfly Run
DESCRIPTION:The Butterfly Run is back!\nAfter a break due to the pandemic\, we are delighted to invite you back to our Butterfly Run at the Olympic Park in London. It’s ‘Time to Fly!’ \nCure EB’s Butterfly Run is a celebration of inclusivity taking place on Sunday 25th September 2022.  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. \nAll entrants will receive a Butterfly Run race t-shirt\, race number\, time chip and finisher medal. \nHelp to raise vital funds to cure EB by making a donation or raising sponsorship. \nEB families\, find out more about our Cure EB Family Day. \n \nWhy Butterfly Run?\nCure EB funds medical research to find a cure for all types of epidermolysis bullosa (EB)\, a severe genetic skin condition that leads to blistering and skin loss at the slightest friction. Children with the condition are often referred to as ‘Butterfly Children’ as their skin is said to be as ‘fragile as a butterfly’s wings’. \nWhat we want most is for children and adults to fly free from the pain of EB and make the blisters and wounds stop. \nVisit our research pages to find out more about the research we fund.
URL:https://cure-eb.org/event/cure-eb-butterfly-run/
ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2022/07/Butterfly-Run-2022-900x450-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220519
DTEND;VALUE=DATE:20220520
DTSTAMP:20260502T142900
CREATED:20220729T103115Z
LAST-MODIFIED:20221124T155335Z
UID:16026-1652918400-1653004799@cure-eb.org
SUMMARY:Silver Butterfly Dinner 2022
DESCRIPTION:
URL:https://cure-eb.org/event/silver-butterfly-dinner-2022/
CATEGORIES:Butterfly Dinner,Gala Events
ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2022/07/Silver-Butterfly-Dinner-2022-900x450-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210923
DTEND;VALUE=DATE:20210924
DTSTAMP:20260502T142900
CREATED:20220729T103242Z
LAST-MODIFIED:20221124T155534Z
UID:16031-1632355200-1632441599@cure-eb.org
SUMMARY:Walk on the Wild Side at London Zoo
DESCRIPTION:
URL:https://cure-eb.org/event/wild-side-london-zoo-2021/
CATEGORIES:Gala Events
ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2022/07/London-Zoo-23-September-2021-900x450-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200911
DTEND;VALUE=DATE:20200912
DTSTAMP:20260502T142900
CREATED:20220729T103312Z
LAST-MODIFIED:20220908T124637Z
UID:16033-1599782400-1599868799@cure-eb.org
SUMMARY:BGC Virtual Charity Day – 11 September 2020
DESCRIPTION:
URL:https://cure-eb.org/event/bgc-virtual-charity-day-11-september-2020/
ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2022/07/BGC-Virtual-Charity-Day-11-September-2020-900x450-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200121T070000
DTEND;TZID=UTC:20200121T235900
DTSTAMP:20260502T142900
CREATED:20220729T103350Z
LAST-MODIFIED:20221124T154537Z
UID:16035-1579590000-1579651140@cure-eb.org
SUMMARY:House of Lords Dinner 2020
DESCRIPTION:
URL:https://cure-eb.org/event/house-of-lords-dinner-21-january-2020/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200119
DTEND;VALUE=DATE:20200124
DTSTAMP:20260502T142900
CREATED:20220729T103443Z
LAST-MODIFIED:20221010T114225Z
UID:16037-1579392000-1579823999@cure-eb.org
SUMMARY:EB World Congress – 19-23 January 2020
DESCRIPTION:
URL:https://cure-eb.org/event/eb-world-congress-19-23-january-2020/
ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2022/07/EB-World-Congress-2020-900x450-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190922
DTEND;VALUE=DATE:20190923
DTSTAMP:20260502T142900
CREATED:20220729T103533Z
LAST-MODIFIED:20220908T124940Z
UID:16039-1569110400-1569196799@cure-eb.org
SUMMARY:Cure EB Butterfly Run at Queen Elizabeth Park
DESCRIPTION:
URL:https://cure-eb.org/event/cure-eb-butterfly-run-at-queen-elizabeth-park-22nd-september-2019/
ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2022/07/Butterfly-Run-2019-900x450-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190516
DTEND;VALUE=DATE:20190517
DTSTAMP:20260502T142900
CREATED:20220729T103658Z
LAST-MODIFIED:20220908T122544Z
UID:16042-1557964800-1558051199@cure-eb.org
SUMMARY:Silver Butterfly Dinner at the Royal Institute of British Architects
DESCRIPTION:
URL:https://cure-eb.org/event/silver-butterfly-dinner-at-the-royal-institute-of-british-architects/
ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2022/07/Silver-Butterfly-Dinner-2011-House-of-Lords-900x450-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20181129
DTEND;VALUE=DATE:20181130
DTSTAMP:20260502T142900
CREATED:20220729T103727Z
LAST-MODIFIED:20220729T103727Z
UID:16044-1543449600-1543535999@cure-eb.org
SUMMARY:Butterfly Brunch Club in Conversation with Mishal Husain and Hadley Freeman
DESCRIPTION:
URL:https://cure-eb.org/event/butterfly-brunch-club-in-conversation-with-mishal-husain-and-hadley-freeman/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180930
DTEND;VALUE=DATE:20181001
DTSTAMP:20260502T142900
CREATED:20220729T103755Z
LAST-MODIFIED:20220908T123744Z
UID:16046-1538265600-1538351999@cure-eb.org
SUMMARY:Cure EB Butterfly Run
DESCRIPTION:
URL:https://cure-eb.org/event/cure-eb-butterfly-run-2/
ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2022/07/Butterfly-Run-2018-900x450-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170903
DTEND;VALUE=DATE:20170904
DTSTAMP:20260502T142900
CREATED:20220729T105848Z
LAST-MODIFIED:20221010T123304Z
UID:16062-1504396800-1504483199@cure-eb.org
SUMMARY:Parallel London 2017
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_gallery type=”image_grid” images=”16064\,16065\,16066\,16067\,16068\,16069″ img_size=”full” onclick=”” column_number=”5″ grayscale=”no” images_space=”gallery_without_space”][/vc_column][/vc_row]
URL:https://cure-eb.org/event/parallel-london-2017/
ATTACH;FMTTYPE=image/jpeg:https://cure-eb.org/wp-content/uploads/2022/07/PL-Linus-and-gabrielius-150x150-1.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170729
DTEND;VALUE=DATE:20220730
DTSTAMP:20260502T142900
CREATED:20220729T104746Z
LAST-MODIFIED:20220729T131858Z
UID:16048-1501286400-1659139199@cure-eb.org
SUMMARY:GFI Charity Day 2017
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_gallery type=”image_grid” images=”16189\,16187\,16186″ img_size=”full” column_number=”4″ grayscale=”no” images_space=”gallery_without_space”][/vc_column][/vc_row]
URL:https://cure-eb.org/event/gfi-charity-day-2017/
ATTACH;FMTTYPE=image/jpeg:https://cure-eb.org/wp-content/uploads/2022/07/GFI-Damian.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170729
DTEND;VALUE=DATE:20170730
DTSTAMP:20260502T142900
CREATED:20220729T110902Z
LAST-MODIFIED:20220908T123204Z
UID:16088-1501286400-1501372799@cure-eb.org
SUMMARY:SRF Butterfly Brunch Club 2017
DESCRIPTION:
URL:https://cure-eb.org/event/srf-butterfly-brunch-club-2017/
ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2022/07/Danielle-de-Niese-2014-St-Johns-Smith-Square-900x450-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170729
DTEND;VALUE=DATE:20170730
DTSTAMP:20260502T142900
CREATED:20220729T110730Z
LAST-MODIFIED:20220729T110742Z
UID:16082-1501286400-1501372799@cure-eb.org
SUMMARY:Family Day 2017
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_gallery type=”image_grid” images=”16083\,16084\,16085\,16086″ img_size=”full” onclick=”” column_number=”4″ grayscale=”no” images_space=”gallery_without_space”][/vc_column][/vc_row]
URL:https://cure-eb.org/event/family-day-2017/
ATTACH;FMTTYPE=image/jpeg:https://cure-eb.org/wp-content/uploads/2022/07/FamDay-Mason-150x150-1.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170529
DTEND;VALUE=DATE:20220730
DTSTAMP:20260502T142900
CREATED:20220729T105956Z
LAST-MODIFIED:20220908T123635Z
UID:16071-1496016000-1659139199@cure-eb.org
SUMMARY:Vitality 10k
DESCRIPTION:
URL:https://cure-eb.org/event/vitality-10k/
ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2022/07/Vitality-10k-Run-29-May-2017-900x450-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170523
DTEND;VALUE=DATE:20220730
DTSTAMP:20260502T142900
CREATED:20220729T110227Z
LAST-MODIFIED:20220908T123858Z
UID:16079-1495497600-1659139199@cure-eb.org
SUMMARY:Virgin London Marathon
DESCRIPTION:Sohana with her dad James after he finished the 2017 London Marathon
URL:https://cure-eb.org/event/virgin-london-marathon/
ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2022/07/Virgin-London-Marathon-19-April-2019-900x450-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170518
DTEND;VALUE=DATE:20220730
DTSTAMP:20260502T142900
CREATED:20220729T110142Z
LAST-MODIFIED:20220729T110142Z
UID:16074-1495065600-1659139199@cure-eb.org
SUMMARY:RIBA – Silver Butterfly Dinner
DESCRIPTION:
URL:https://cure-eb.org/event/riba-silver-butterfly-dinner/
ATTACH;FMTTYPE=image/jpeg:https://cure-eb.org/wp-content/uploads/2022/07/18768392_1425640437474445_8035239128576634743_o-300x229-1.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20161223
DTEND;VALUE=DATE:20161224
DTSTAMP:20260502T142900
CREATED:20220729T111520Z
LAST-MODIFIED:20220802T103723Z
UID:16105-1482451200-1482537599@cure-eb.org
SUMMARY:Sohana wins a Prime Minister’s Points of Light award
DESCRIPTION:Read full article here
URL:https://cure-eb.org/event/sohana-wins-a-prime-ministers-points-of-light-award/
ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2022/07/Sohana-wins-a-Prime-Ministers-Points-of-Light-award.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20161207
DTEND;VALUE=DATE:20161208
DTSTAMP:20260502T142900
CREATED:20220729T111053Z
LAST-MODIFIED:20220729T111053Z
UID:16092-1481068800-1481155199@cure-eb.org
SUMMARY:Cadogan Hall Concert
DESCRIPTION:
URL:https://cure-eb.org/event/cadogan-hall-concert/
ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2022/07/SRF-concert-flyer-1-724x1024-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20160729
DTEND;VALUE=DATE:20220730
DTSTAMP:20260502T142900
CREATED:20220729T111150Z
LAST-MODIFIED:20220729T111150Z
UID:16097-1469750400-1659139199@cure-eb.org
SUMMARY:Tom’s cycle round the World for SRF
DESCRIPTION:
URL:https://cure-eb.org/event/toms-cycle-round-the-world-for-srf/
END:VEVENT
END:VCALENDAR