🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

🚨 There is a NEW deadline to vote for your top 10 EB research priorities! 🚨 You now have until Monday 2nd December 2024. The survey (which takes just 15 minutes to complete!) will shape our research strategy for years to come 👉 emea.focusvision.com/survey/selfser…?

Join Debra Singapore & PFMD.org for the fourth and final session of PE101 webinar series: Understanding Health Technology Assessment - How Patients Can Shape Healthcare Decisions. 📆 Wed 26th Feb 🕧️12PM CET 📍Online 🔗Register here: patientengagement.synapseconnect.org/events/peof-de…

💜🌍 Today is Rare Disease Day! 🌍💜 Together, we stand with the 300 million people worldwide living with rare diseases. In uniting on this day we can raise awareness, advocate for change, and promote a more equitable future! ⚖️ Learn more: rarediseaseday.org

💙🌍Today is Rare Disease Day!🌍💙 We're proud to be part of the #RareDiseaseDay community representing people around the world living with #EpidermolysisBullosa. Together, we strive for a world where people living with rare derma conditions lead healthy, fulfilling lives.

📢 EMA Recommends Vyjuvek for Approval 📢 On February 28, 2025, the EMA issued a positive recommendation for Vyjuvek, the first topical gene therapy for people of all ages with dystrophic EB (DEB) in the European Union. 🔗Read more here: debra-international.org/post/ema-recom…

Support Yale students' academic research on innovative footwear for people living with EBS! 👟 Your responses will remain entirely anonymous and will be used for academic and learning purposes for the students and teaching team involved. ➡️docs.google.com/forms/d/e/1FAI…

🌍♀️ This #InternationalWomensDay, we stand for better healthcare access for women with EB! We’re proud to share this powerful testimony from DEBRA International’s President, Ritu Jain, as shared with Rare Diseases International.

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-…

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🦋

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!

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

🦋🫂 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…

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…

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

☀️🎗️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

🌍💙 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 🙏

.DEBRA International 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 Debra - The Butterfly Skin Charity who funded the CPG. 👉🏽 Download free here: debra-international.org/post/new-manag…

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.

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…