DEBRA International

DEBRA International team meeting in Paris 🌍 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. #DEBRAInternational #GlobalTeam #StrategyMeeting

💥📣 NEW! Management of Oesophageal Strictures in Inherited EB: a Clinical Practice Guideline now published! 🏥This is an essential tool for health professionals, highlighting management priorities in the care of oesophageal strictures in inherited epidermolysis bullosa (EB) and provide clinicians access to recommended diagnostic, treatment, and preventative care options. 👀 Please note: The final typeset article will be published in due course so keep your eyes peeled! 🌍️🙏We would like to thank everyone who contributed to this work, especially Debra - The Butterfly Skin Charity who funded the CPG. It is a great resource, which will help many people and their families living with EB around the world. 👉🏽 Read more and download this invaluable resource free here: https://lnkd.in/eiHivAwu

Reflecting on this historic milestone, RDI Council Secretary Ritu Jain reminds us that the adoption of the #Resolution4Rare is more than a achievement — it’s a call to action for the global rare disease community. "The Resolution is the beginning of a new era of hope for people with rare diseases. So please, join us in building on this momentum to develop a Global Action Plan, translating this vision into action." DEBRA International DEBRA Singapore GlobalSkin - International Alliance of Dermatology Patient Organizations #WHA78 #UHC #HealthForAll

🌍💙 International Nurses Day - Celebrating EB Nurses Today, we proudly recognise the incredible EB nurses around the world for their time, expertise, and compassion for those living with Epidermolysis Bullosa every single day. From delicate wound care to emotional support, their care and dedication makes a profound difference in the lives of EB families and those living with EB. EB nurses are essential partners in our mission to ensure that no one faces EB alone. Join us in thanking them for their invaluable work and dedication 🙏 #InternationalNursesDay #EBNurses #DEBRAInternational #EpidermolysisBullosa

☀️🎗️May is Skin Cancer Awareness Month People with Epidermolysis Bullosa (EB) are at much higher risk of developing SCC, Squamous Cell Carcinoma, a serious and often aggressive form of skin cancer. Why? Because SCC often forms in chronic wounds, scars, or areas of repeated skin damage, all common in EB. It may look like a wound that won’t heal, a fast-growing lump, or an area of skin that feels different. ✅ SCC is treatable, especially when caught early ✅ Regular skin checks and photo tracking can save lives ✅ Surgery is the main treatment, with techniques tailored to preserve quality of life 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. #SkinCancerAwarenessMonth #SkinDiseasesResolution #EndTheStigma #EarlyDetectionSavesLives #SkinCancerIsSerious #ThisIsSkinCancer

It was great to have DI President Ritu Jain speak at the #GSChampion2025 plenary session, “Caring for the Mental Health Burden of Skin Disease.” Ritu’s powerful talk focused on the stigma experienced by people living with skin conditions, whether symptoms are visible or not. She highlighted the importance of culturally informed, patient-led support systems, and the layers of self-stigma, social stigma, and structural stigma that contribute to mental health challenges. A vital step toward breaking down stigma and ensuring people with EB, and all dermatological conditions, are seen, heard, and supported.

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). Developed by Abeona Therapeutics, ZEVASKYN™ is the first and only gene therapy that uses a patient’s own skin cells (autologous cell-based gene therapy) to help treat the condition. 🔗 For more information on ZEVASKYN, visit our website: https://lnkd.in/eRkxVd7E

🦋🫂The forgotten social and emotional toll of rare diseases 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. Tackling the social and emotional impacts is crucial for better support. Hear from DEBRA International President Ritu Jain as she shares powerful insights in this must-read piece ➡️ https://lnkd.in/dBBPd4hr

This #WorldHealthDay, we’re highlighting the importance of quality care for mothers, pregnant people and newborns🤰💙 For expecting families, understanding and preparing for conditions like Epidermolysis Bullosa (EB) is crucial. Early and specialised care prevents complications, protects their delicate skin, and ensures the best possible start in life. DEBRA International’s Neonatal Epidermolysis Bullosa: A Clinical Practice Guideline provides vital information to help medical teams manage EB from birth. By sharing this resource with your healthcare providers, you can help ensure your child receives the expert care they need from day one. Download for free, alongside more useful resources, from our website: https://lnkd.in/enUvv-7k #HopefulFutures #HealthForAll #EpidermolysisBullosa #MaternalHealth #NewbornCare

We're proud to bring you two DEBRA sessions at this year's EWMA in Barcelona! Join us for: ➡️What’s New in EB? Different Perspectives with EB specialist nurses, researchers and a family living with EB When? Wednesday 26 March, 13:00 - 14:00 Where? Room 112 ➡️ The Fundamentals of EB Wound Care Workshop with EB specialist nurses When? Friday 28 March,10:00 - 11:30 Where? Meeting Room M214, Level M2 Come by our booth and say hi, or find out more ways you can get involved with DEBRA International. 📍Booth #115 We look forward to seeing you there! Thank you to the fantastic team at DEBRA Spain/Piel de Mariposa for hosting and holding these invaluable sessions. #EWMA #EpidermolysisBullosa