@InterDEBRA

For a world where anyone with epidermolysis bullosa (EB) has support from a DEBRA group, and access to specialist treatments, healthcare, and social support.

 Global
debra-international.org
Joined November 2015
  • Tweets627
  • Following439
  • Followers1K
218Media
Expanding newborn screening has the potential to change lives by enabling earlier diagnosis, access to specialist care, and timely treatment for more rare conditions. Every child deserves the best possible start in life. Read more: healthpolicy-watch.news/who-…
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🌍 New multilingual EB educational resources are now available from the BUR-EB project. Available in 7 languages, the resources include: 🎧 Podcasts 📹 Videocasts 📊 Infographics 📘 Interactive workbooks Free to access, download, and share: debra-international.org/post…
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In 2025, DEBRA International joined DEBRA UK’s JLA Priority Setting Partnership to identify top research priorities for the global EB community. Now, the project has won the Best Use of Innovation 2026 BOBI Award! Congratulations @SynergyHealthUK @CharityDEBRA @LindAlliance 👏
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Hear more in our write-up on DEBRA International at EWMA 2026 in Bremen (6–8 May), where we joined 6,000+ delegates and co-hosted a round table on EB with DEBRA Germany. Clinical & lived experiences shared by Dr Gewert, Iris Hof & Andreas Miller 👉 debra-international.org/post…
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That’s a wrap! Thank you to @RareRevolutionM for hosting DEBRA International and helping spotlight the global EB community. Stay connected and let’s keep raising awareness and driving change together💙🦋
RARE Revolution Magazine®
@RareRevolutionMApr 7
Thank you for following our takeover! We’re proud to share stories and experiences from across the EB community, helping raise awareness of what it means to live with #EB. To learn more or get involved, follow us and stay connected @InterDEBRA or visit debra-international.org/ PLUS don’t miss the next edition of RARE Revolution Magazine for an in-depth look at EB worldwide 🌍💻
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Mark your calendars! 📅 EB Awareness Week takes place 25–31 October 💪We're asking people to wear clothes #InsideOutforEB showing the hidden pain of EB, where even seams cause blisters. Follow us to learn more and get involved @InterDEBRA🌍🦋💙
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To truly understand EB, you have to hear it from those who live it every day. As part of #EBAwarenessWeek last year, we shared this video of people from around the world who came together in at @IADPO in Prague to share their stories 🌍 youtube.com/watch?v=D0Z8eSUa… With special thanks to @ChiesiGRD 🦋💙
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The @InterDERBA Youth Council helps shape a future where every young person with EB feels seen and supported. 🦋💙 Take a listen to the strength and honesty of their stories ⬇️ Open to everyone 18 and up, find out more about support from the DIYC today linktr.ee/debrayouthcouncil
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Discover the reality of living with epidermolysis bullosa (EB), the painful "butterfly skin" condition. Featuring global personal insights, this article highlights how DEBRA International is fighting stigma and isolation to connect patients and advance care worldwide. rarerevolutionmagazine.com/u… #EpidermolysisBullosa #EB #RareDisease #DEBRAInternational #ButterflySkin #EBAwareness #ChronicIllness #Inclusion @InterDEBRA
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Our international events connect the global EB community, creating space to share knowledge and drive progress. Here’s a look at EB 2026 Congress in Brazil 🇧🇷 with DEBRA Brasil 📲 Follow us to see where the next congress will take place! @InterDEBRA
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Replying to @InterDEBRA
@InterDEBRA provides free Clinical Practice Guidelines and Patient Guides in multiple languages📘🌍 Our latest resource, “Intimacy Matters: A Guide to Sexuality with EB,” importantly explores intimacy, relationships, and sexual health. Download for free➡️ debra-international.org/sexu…
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Replying to @InterDEBRA
@InterDEBRA supports 50+ member groups, working together to improve care, share knowledge, and support research 🌍 Through these collaborations, we launched EB Without Borders, a free initiative improving access to expertise and care🦋💙 Find out more ➡️ debra-international.org/eb-w…
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Have you heard of #EB before? Epidermolysis Bullosa (EB) is a rare genetic condition causing extremely fragile skin, often called the “butterfly skin condition” 🦋 Around 500,000 people are living with EB, though the true number is likely higher due to limited awareness and diagnosis❤️‍🩹 EB can cause painful blisters from the slightest touch and affects daily life in many ways — from care to mobility, eating, speaking, and independence. It can also lead to stigma and isolation. But EB does not define the person. Behind every diagnosis is a person with a story, which we’ll share throughout the day ➡️ debra-international.org/what… @InterDEBRA
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All day we're over on @RareRevolutionM sharing more about the work DEBRA International has been doing, how you can get involved and important stories about #epidermolysisbullosa 🦋 Head on over and get involved!
RARE Revolution Magazine®
@RareRevolutionMApr 7
Welcome to our takeover! 🦋 @InterDEBRA is a global network of organisations working together to support people living with “the worst disease you’ve never heard of”, Epidermolysis Bullosa #EB. We connect communities, support research, and advocate for better care for all💙
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✨ New Therapies & Devices for EB – Wound Care 📅 12 Dec 2025 | ⏰ 15:00 CET Hear from experts MD Peter Marinkovich & EB nurse Natividad Romero Haro on the latest in EB treatment. 👉 Register: debra-international-org.zoom…
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Years ago, I met Rafi, a girl born with an agonizing skin condition called epidermolysis bullosa. EB causes extremely fragile skin, widespread & painful blisters and constant scarring. As work to #CureEB continues, see my reso. marking #EBAwarenessWeek🦋: nyassembly.gov/leg/?default_…
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📢 Today is Inside Out Day! Hundreds are turning their clothes inside out for everyone living with butterfly skin. And so are we. We’re in the Oireachtas presenting the #EBButterflyReview to government, showing where EB care in Ireland needs change. #InsideOutForEB
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We're turning our clothes inside out for EB - and we want you to join us! ⁠ ⁠ Take a photo of yourself wearing clothing inside out, post it on social media, include the hashtags #InsideOutforEB #EBAwarenessWeek2025 and tag us to be part of this global awareness campaign 🌍🦋⁠
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Oct 25–31 is EB Awareness Week. WPA members DEBRA South Africa & DEBRA Malaysia are raising awareness of this rare “butterfly skin” condition. We stand with the EB community worldwide. #EBAwarenessWeek #WorldPatientAlliance @InterDEBRA
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🦋#InsideOutforEB, partecipa anche tu alla campagna di @InterDEBRA per sensibilizzare sull' #EpidermolisiBollosa ! 👕Indossa per un giorno i vestiti👚al rovescio come fanno i bambini con EB per evitare cuciture dolorose a contatto con la pelle #fragile 👇 malattierare.gov.it/news/det…
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