DEBRA International

✨ 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.us/meeting/regist…

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_f…

📢 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

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 🌍🦋⁠

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

🦋#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/dettaglio…

⏰ Early Bird ends soon! Join us in Brazil 🇧🇷 for the International EB Congress 2025. 🎟️ Register by 5th September for exclusive reduced rates! 👉 eb2026.com.br #EBCongress2025 #EarlyBird #EB

We're proud to support not just #EBresearch but also Clinical Practice Guidelines (CPGs) to improve #EBcare. The latest CPG focuses on managing oesophageal strictures in inherited #EB and is now available to help clinicians worldwide improve care. 👉debra.ie/news/new-clini…

From Austria, Spain, France, Australia, and Singapore, our team came together both in person and online to brainstorm and shape the future of our strategy. 🌎 A huge thank you to Yann Le Cam for joining us as an advisor, whose insights have been invaluable.

.@InterDEBRA and Dermaliq Therapeutics are joining forces to advance cutaneous drug delivery into the skin for #EpidermolysisBullosa (EB). thedermdigest.com/debra-research…

💥📣 NEW! Management of Oesophageal Strictures in Inherited EB: a Clinical Practice Guideline now published! 🌍🙏We would like to thank everyone who contributed to this work, especially @debraireland who funded the CPG. 👉🏽 Download free here: debra-international.org/post/new-manag…

🌍💙 International Nurses Day Today, we proudly recognise the incredible EB nurses around the world. Their care and dedication makes a profound difference in the lives of EB families and those living with EB. Join us in thanking them for their invaluable work and dedication 🙏

☀️🎗️May is Skin Cancer Awareness Month Early detection of skin cancer in people with EB is essential. Trust your instincts when something just doesn't feel right and contact your healthcare professional. Look for the 5 signs to watch out for ➡️ #SkinCancerAwarenessMonth

Last week, DI President Ritu Jain presented at the @IADPO #GSChampion2025. She highlighted the importance of culturally informed, patient-led support systems, and the layers of stigma that contribute to mental health challenges.

Today, 29th April 2025, the FDA approved a new treatment called ZEVASKYN™ (pronounced ZEE-vah-skin) for adults and children with recessive dystrophic epidermolysis bullosa (RDEB). 🔗 For more information on ZEVASKYN, visit our website: debra-international.org/post/abeona-th…

🦋🫂 For people with rare diseases, such as EB, living in a high- or low-income country shapes their experience, but all can face stigma, isolation, and neglect. Hear from DI President Ritu Jain as she shares powerful insights in this must-read piece ➡️ re-solveglobalhealth.com/post/the-forgo…

This #WorldHealthDay, we’re highlighting the importance of quality care for mothers, pregnant people and newborns🤰💙 Our free Neonatal Epidermolysis Bullosa CPG provides vital information to help medical teams manage EB from birth: debra-international.org/neonatal-care #HealthForAll

Join us for: ➡️What’s New in EB? Different Perspectives 26 March, 1pm-2pm, Room 112 ➡️ The Fundamentals of EB Wound Care Workshop 28 March,10am - 11am, Meeting Room M214, Level M2 📍Come by our booth #115 and say hi! We look forward to seeing you there!

Every story has the power to inspire, connect, and create change. This #WorldStorytellingDay, we celebrate the voices of the EB community💙📖 A special thank to DIYC President, Toni, for sharing her reasons why storytelling is important for the EB community🦋

This is your last chance to apply! The deadline is Monday, 17 March. Send us your application before it's too late and seize the opportunity to be part of this enriching experience. esdr.org/events/future-…