The ED Society
@EDSocietyUK
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Following
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Our vision is that every individual affected by Ectoderma Dysplasia is equipped with the knowledge needed to manage ED effectively and live life to the full.
Cheltenham, England
Joined March 2017
Our incredible #Ambassador, Hannah, helps us shine a light on the abilities of every child affected by ED in a heartwarming video this #EDAwarenessMonth🩵 Let's embrace diversity, inclusion, and endless possibilities!
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RT @EDSocietyUK: Our incredible #Ambassador, Hannah, helps us shine a light on the abilities of every child affected by ED in a heartwarmin…
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🚨Urgent Call for Sponsorship🚨 ICED25 is a vital event, bringing together medical experts, researchers & families to advance knowledge, treatment & support for the ED community However, we urgently need sponsors to make it happen! #JournoRequest 👉️
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Want an EASY way to show your support this #EDAwarenessMonth Show The ED Society some love by entering #easyfundraising's Love Letters & we could win a FREE £200 donation🫶 Sign up, visit the giveaway page & open a letter🥰 Play here before it ends:
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🏃♀️Take on the #SweatItOutForED Challenge Complete 28 miles in 28 days your way this February for #EDAwarenessMonth💙 Every step counts towards raising awareness & vital funds Tag friends & share your journey with #EDAwarenessMonth Let’s make February count🙌
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"As we stand united this #EDAwarenessMonth, let's amplify our collective voice, inspire change, and create a world where ectodermal dysplasia is well recognised" 💙 #EctodermalDysplasia #SpreadTheWord #RareDisease
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We will be sharing facts throughout #EDAwarenessMonth to help spread awareness & build understanding of #ectodermaldysplasia.💙 Let’s work together to educate, raise #awareness & support those living with ED. Every share helps make a difference!🤩
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RT @RareDiseaseKE: Rare Disease Day 2025 Counting down the days to this year's RDD with the theme being "More Than You Can Imagine". RDs…
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⏳The countdown is on – there's 6 weeks left until the deadline to join our team for the #BrightonMarathon🏅 We need 1 more runner - could it be you? You'll be making a real difference—not only by pushing your own limits but every step you take will directly support our mission🤩
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🏃♀️Join #TeamED for the #BrightonMarathon 2025 We’ve secured 3 charity places — two spots are already taken, but we need ONE more passionate individual to join Team ED🙏🏼 Are you up for the challenge—or know someone who might be? We’d love to hear from you!🤩
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Thank you to everyone who is supporting us on #easyfundraising🙏Your continued support means the world to us! Join today & help raise FREE donations for the ED Society every time you shop online! Plus, sign up today and we could win a £250 donation:
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🎄Merry Christmas🎄 What a year it’s been! We want to say a huge THANK YOU to you all. Your support means everything to us—it inspires us to keep going, growing & striving🤩 Here’s to an even bigger & better 2025, filled with growth, success, and shared achievements🌟
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🎉The latest edition of our annual newsletter, The Yearly Ed-Lines, is here🎉 This year’s edition is a reflection of everything our ED community has accomplished and experienced together. Check it out now! 👇🏻
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We are thrilled to share our brand-new logo with you all🎉 Why the change? With a fresh design that reflects our mission to Empower Every Journey, it captures who we are today & where we're headed together💙 We hope you love it as much as we do🥰 #EmpoweringEveryJourney
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Thank you to everyone who is supporting us on #easyfundraising🙏🏼 Your ongoing support means the world to us! If you've not signed up yet, please join today & share with all family & friends👌🏼 Plus when you sign up, we could win a £300 donation🥳 👇🏼
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📢Voting closes today Please vote & share for @DebbieToddPhot0 who has been shortlisted for this year's British Photography Awards📸 for her stunning photo of our ambassador Hannah, alongside Ramen the Sphynx🐈⬛ @GBPhotoAwards Please vote here👉🏼
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Thank you Caroline @BenefactGroup, who visited us last year to present our previous #MovementForGood award, we’ve been chosen again to receive £1k Seeing her continued support & ongoing nominations for us is inspiring! Thank you everyone who voted your support means the world🙏🏼
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Along with Metabolic Support UK, we invite you to take part in a quick survey about your views of the use of disorder-specific images. Representation & visible difference is a vital issue for many of our ED community, so your feedback is invaluable! 👉
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🔊Don’t forget #GiftAidAwarenessDay is this Thursday! 💡#GiftAid enables small charities like ours to stretch every donation further, empowering us to do even more for those we support 🗣️Share #TickTheBox on your socials & let everyone know how easy it is to make an impact✅️
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RT @RareRevolutionM: Join The Ectodermal Dysplasia Society for their Family Day at ICED25 on 10th - 12th June 2025 in Birmingham. They will…
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We've had 44 donations over 30 days thanks to our dedicated supporters👏 Keep up the good work 🥰 It's never too late to sign up if you haven't already?👀 If you sign up today we could win 1 of 10 £100 donations!🥳 #easyfundraising
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