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We're so glad you shared this brilliant work at the #RareResearch25 Conference! A great example of progress and hope for #EBcare and #EBresearch in #RareSkin disease. Thank you for joining us and for everything you contribute to advancing rare disease research!

Debra co-funded researchers from Maynooth University, @rcsi_irl and University College Dublin shared their research at our recent EB Expert Panel workshop. Powerful to see researchers engaging directly with those impacted by #EB, ensuring their work is relevant and shaped by lived experiences. #PPI

Researchers at University College Dublin are conducting an anonymous survey to explore the experiences of families caring for a child with a rare disease. The survey takes approx. 30 mins and was co-designed with parents to reflect real-life challenges. 📋Survey: …althandagriscience.fra1.qualtrics.com/jfe/form/SV_7R…

Huge congrats to Prof. Wenxin Wang UCD Medicine on winning the 2025 NovaUCD Innovation Award!🎉 We're proud to support his gene-editing therapy for #RDEB - offering real hope to those living with #EB.🦋👏 #EBResearch #epidermolysisbullosa 👉bit.ly/UCD-Wang-NovaA…

At our 6th #EB Expert workshop, lived experience led the way. The key areas of focus were advancing #EBresearch and evolving how Debra communicates with the #EBcommunity and the public. Find out what happened and read the workshop report here👉debra.ie/news/united-fo… #PPI #EB

Two new #EB treatments—Filsuvez & Vyjuvek—offer hope.🦋 Filsuvez may arrive in Ireland soon, but Vyjuvek, a game-changing #genetherapy, could take years unless access speeds up. Debra is working hard to make it happen. 👉bit.ly/NewEBtreatments #HealthResearchMatters

Beautiful limited edition tote bags available now at MACEIreland, designed by Sophia who lives with EB. She’s teaming up with Mace and Johnny Sexton to raise awareness of EB. Get yours now! All proceeds go to supporting people impacted by EB. 🦋 #ButterflySkin #EBAwareness

Thanks to SSPC for a fantastic Fireside chat University College Dublin. Researchers Rob Elmes and Hilal Kirpik joined our Head of Research, Sinead Hickey - to discuss the role of #PPI in their #EBresearch. A project we're proud to co-fund with Research Ireland. 👉bit.ly/SOWOBresearch

Irish teenager and MACEIreland Lead National Campaign to raise awareness and Support for rare skin condition Debra - The Butterfly Skin Charity shelflife.ie/irish-teenager…

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…

Thank you Arlene Harris. And thank you Sophia for showing us what true strength looks like. Your design is a symbol of courage, hope, and the butterfly effect of kindness for everyone impacted by epidermolysis bullosa. 🦋

We’re excited to share the final reports on the #EB Priority Setting Partnership (#PSP) — a global effort to identify what matters most in #EBresearch, shaped by people living with EB, families & clinicians. 👉debra.ie/news/eb-commun… #HealthResearchMatters #JLA DEBRA UK

In 2024, the global #epidermolysisbullosa community spoke — and now we have the top #EBresearch priorities, chosen by the #EBcommunity, for the #EBcommunity. DEBRA UK 📝Read the report 👉debra.ie/news/eb-commun… 👇See the top topics from both #livedexperience & #HCPs:

Trike enthusiast run to raise funds for Debra - The Butterfly Skin Charity echo.ie/trike-enthusia…

🧡 Emma turns 41 on 25 June! We want to create a book filled with hundreds of messages of support Emma Fogarty can turn to for an added layer of strength as she faces the challenge of another year living with EB. 🎈Send Emma a birthday message ➡️ debra.ie/emma

If you or a loved one lives with #epidermolysisbullosa in Ireland, joining the #EBRegistry is a powerful way to support #EBresearch and advance #EBcare. Learn more👉debra.ie/eb-research/eb… NISR Solutions Lara Cuttyla #EB #registries #HealthResearchMatters

Delighted to join Rare Diseases Ireland at the All-Party Group meeting on Rare Diseases to launch our call for rare diseases to be included on the schedule for Ireland’s EU Presidency. Pádraig O'Sullivan TD #RareDiseases #HealthResearchMatters

🌸 Sip, savour & support 💛 Settle in with delicate pastries and heartwarming elegance. For July & August we'll be donating €2 from each Afternoon Tea to Debra - The Butterfly Skin Charity 📧 Book via [email protected] 📞 Or call 045 879 277

Our EB Expert Panel is built on the voice and collaboration of those impacted by #EB. Here’s some feedback from a panel member after our last workshop. Sharing how the experience is sparking reflection, connection, and change. Learn about the panel-debra.ie/eb-expert-pane… #PPI

We’re proud to share our 2025 Research Report — showing how your support is driving #EBresearch that brings real hope, improves lives, and ensures the voice of the #EB community is at the heart of the research process. 🔗Read here: debra.ie/news/our-lates… #HealthResearchMatters