What is Epidermolysis Bullosa? Find out at https://lnkd.in/eUwGuZ3s EB is a rare genetic skin condition that is “Hard to say. Hell to live with.” There are four main types of EB – Dystrophic, Junctional, Simplex and Kindler Syndrome – and they vary widely in the type and severity of symptoms. Find out more about the different types of EB in the lead-up to #EBawarenessweek #CureEB #ResearchtheCure #EBResearch #EB #HardtoSayHelltoLiveWith
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At our next webinar, Dr Joanna Jacków will be discussing her gene editing work in EB: https://lnkd.in/eyPz2w9S Our Research the Cure webinars are free, but you must register. #CureEB #ResearchtheCure #EpidermolysisBullosa #EB #Research #GeneEditing
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We invite you to our fabulous Butterfly Speaker Lunch on Tuesday 3rd December, featuring Mishal Husain and Hadley Freeman in conversation. https://lnkd.in/ehmmZTJV Mishal is a BBC Radio 4 Today programme presenter and Sunday Times Top Ten best-selling author of ‘Broken Threads’ and ‘The Skills’. Hadley is a Sunday Times journalist and best selling author of ‘House of Glass’ and ‘Good Girls’. Join us in London for champagne and a three course lunch at Orrery, followed by Mishal and Hadley in conversation. #CureEB #ResearchtheCure #EpidermolysisBullosa #SpeakerLunch #MishalHusain #HadleyFreeman #BBC #BBCToday #SundayTimesBestseller
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Did you know, when you sign up to Give as you Live the retailers you shop with will make a donation to us for every purchase you make? It's completely free, and the funds help us to #ResearchtheCure for EB. Sign up for us today! > https://lnkd.in/e2b2Zsdi #CureEB #Fundraise #Charity #Donate
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We'd love you to join us for our next Research the Cure webinar with Dr Joanna Jacków. https://lnkd.in/eyPz2w9S to find out more & register for this free webinar. #CureEB #ResearchtheCure #EpidermolysisBullosa #EB #Research #GeneEditing
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We 💙 Family Day! Thank you to everyone who came along & helped make it such a special day! https://lnkd.in/ehJ_tjJk It's always great to get together, and to hear from so many working to find effective treatments and a cure for EB! 🦋 #CureEB #ResearchtheCure #FamilyDay #EB #EpidermolysisBullosa #Research #FamilyFun
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We had an absolute blast at our #ButterflyRun yesterday at Queen Elizabeth Olympic Park Thank you to everyone who came along! Photos & run times are on our website: https://lnkd.in/ebYFFV2M Thank you so much to our corporate sponsors & charity partners, including Bain Capital & The Lily Foundation #CureEB #ResearchtheCure #EpidermolysisBullosa #EB #Running #Inspiration #Motivation
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Thank you Justyna! Great to have you all there 🦋 💙
Today team Tosun participated in Butterfly Run to raise awareness of Epidermolysis Bullosa (EB). EB is a genetic skin blistering condition that affects over 500,000 children and adults around the world, 5000 of those in the UK. It has a devastating impact on sufferers and their families. It causes pain for every second, in every minute, of every day and is unrelenting in the distress it causes. Children with EB are known as ‘Butterfly Children’ because their skin is said to be as fragile as the wings of a butterfly. We had a wonderful day raising awareness, fundraising for this Cure EB and celebrating these incredible people living with EB.
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Fabulous day at the #ButterflyRun and #FamilyDay. A few photos today, more to say tomorrow! Thank you to all who participated and to the scientists who gave up their time to come and talk to us
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Want to be on the starting line at the Butterfly Run this weekend but missed out on booking your ticket online? Don't worry, there are still some places available on the day - visit https://lnkd.in/eAgJhFb9 to find out how you can join us at Queen Elizabeth Olympic Park 🦋 If you can't make it but would still like to support Cure EB, you can 💻 Make a Butterfly Run donation https://lnkd.in/ebSC7uA3 📲 Text BUTTERFLY to 70560 to donate £10. Texts cost the donation amount plus one standard network rate message. 🦋 #CureEB #ResearchtheCure #ButterflyRun #OlympicParkLondon #TimetoFly #EB #Research #Rare
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Come for the run or come for the fun! Whether you're a serious runner or just fancy a social run in the park, our Butterfly Run is for you! Run, walk, wheel, or whatever you can do to complete a 1k, 5k or 10k race at our Butterfly Run, while having fun & raising awareness of EB 🦋 https://lnkd.in/eAgJhFb9 📅 Sunday 29th September 📍 Queen Elizabeth Olympic Park 🦋 We'd love you to join us! Online booking closes 9am on Thursday so be quick! #CureEB #ResearchtheCure #ButterflyRun #OlympicPark #TimetoFly #10krun #5krun #1kfunrun #StopthePain #EpidermolysisBullosa #RareDisease #RunforRare #FamilyFun #RunwithFriends
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