@debraireland.bsky.social
We are the butterfly skin charity. Uniting for change for everyone living with epidermolysis bullosa (EB). Registered charity (CHY 8703/RCN 20021726)
🦇 Happy Halloween!
Don’t miss Ken's Halloween House of Horrors!
Open 4–9pm tonight at 5 Bayview Court, Killiney, A96NH73
This is Ken’s 17th year supporting Debra! 🧡
Huge thanks to Ken & his family for supporting people living with EB. 🦋
#happyhalloween
📢 Today is Inside Out Day!
Hundreds are turning their clothes inside out today for everyone living with butterfly skin. And so are we. 🦋
We’re in the Oireachtas today presenting the EB Butterfly Review to government, showing where EB care in Ireland needs change. #InsideOutForEB #EBButterflyReview
Behind every statistic is a person with EB living with daily pain.
Today, their voices are being heard at Leinster House.
#EB #butterflyskin #EBbutterflyreview #EBAwarenessWeek
Ring-fenced, annual funding would make a world of difference to the EB community.
We are working with the Government and the HSE to make it happen.
#EB #butterflyskin #EBbutterflyreview #EBAwarenessWeek
"Carers often feel like prisoners because care is fragmented and fragile.” - Liz Collins, mother of Claudia, who lives with EB.
We are at the AV room today to present the EB Butterfly Review to Government.
#EB #butterflyskin #EBbutterflyreview #EBAwarenessWeek
“I often have to borrow bandages from my son.” - Amanda, living with EB.
No one should have to fight this hard for basic care.
#EB #butterflyskin #EBbutterflyreview #EBAwarenessWeek
“You are punished in every single way.” - Amanda, living with EB.
Powerful testimony at Leinster House today.
#EB #butterflyskin #EBbutterflyreview #EBAwarenessWeek
“This is not just a report, it’s a lifeline for the EB community.”
#EB #butterflyskin #EBbutterflyreview #EBAwarenessWeek
We are asking government for:
-Expedite the 700k funding to improve support & services.
-Reduce the financial burden through a national bandage scheme.
-Improve access to the long term illness scheme & medical card.
-Build awareness amongst wider healthcare workforce.
#EBbutterflyreview
A full room at Leinster House this morning as TDs & Senators hear first-hand the urgent need for better EB care in Ireland.
#EB #butterflyskin #butterflyreview #EBAwarenessWeek
We are live at Leinster House for the launch of the EB Butterfly Review.
Today is about amplifying the voices of people living with EB and their families.
#butterflyskin #butterflyreview #EBAwarenessWeek
Fantastic to see @bfcdublin.bsky.social
women's team in action in their Women's FAI Cup Final yesterday and thank you for supporting #InsideOutforEB.
www.debra.ie/news/bohemia...
📢 Calling all schools, companies, gyms, sports clubs and individuals. On Wed Oct 22, take a bold step for people with EB.
Wear your clothes inside out 👕 for the day, fundraise, and support research to end EB forever. Every action counts! #InsideOutEB
debra.ie/insideout
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 #EBcommunity is at the heart of the research process.
🔗Read here: debra.ie/news/our-lat...
#HealthResearchMatters #PPI #EB
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 most recent workshop — sharing how the experience is sparking reflection, connection, and change.
Learn more about the panel- www.debra.ie/eb-expert-pa...
#PPI
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.
@oireachtasnews.bsky.social #RareDiseases #HealthResearchMatters
In today's @independent.ie this young woman told me about the painful skin condition she lives with and how, despite daily pain, she has designed a bag, which is on sale in Mace stores across Ireland to help raise funds for @debraireland.bsky.social
www.independent.ie/irish-news/h...
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👉 www.debra.ie/eb-research/...
#HealthReserchMatters #EB #Registries
In 2024, the global #EB community spoke — and now we have the top #EBresearch priorities, chosen by the #EBcommunity, for the #EBcommunity. @charitydebra.bsky.social @jameslindalliance.bsky.social
📝Read the report: t.co/veC46NvD0b
👇See the top topics from both #livedexperience & #HCPs:
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.
👉 www.debra.ie/news/eb-comm...
@charitydebra.bsky.social @jameslindalliance.bsky.social
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.
👉 www.debra.ie/news/new-cli...
Thanks to @sspcresearchcentre.bsky.social for a great Fireside Chat @ucddublin.bsky.social.
Dr Rob Elmes & Postdoc Hilal Kirpik joined our Head of Research, @sineadhickey.bsky.social to discuss #PPI in their #EBresearch - a project we’re co-funding with @researchireland.ie.
👉 bit.ly/SOWOBresearch
Designed by Sophia who lives with EB, these beautiful limited edition tote bags are available now at Mace stores. Sophia is 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
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/NewEBtreatme...
#HealthResearchMatters
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 👉 www.debra.ie/news/united-...
#PPI #EB
Huge congrats to Prof. Wenxin Wang @ucddublin.bsky.social 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-Nov...
Researchers @ucddublin.bsky.social are conducting an anonymous 30-min survey on the experiences of families caring for a child with a #RareDisease.
The survey was co-designed with parents to reflect real-life challenges.
Survey: healthandagriscience.fra1.qualtrics.com/jfe/form/SV_...
#EB
Researchers and individuals impacted by EB collaborating.
Dr Marko Dobricic (RCSI)
Dr Hilal Kirpik (Maynooth University)
Professor Des Tobin (UCD)
Debra co-funded researchers from @maynoothuniversity.ie, @rcsi.bsky.social and @ucddublin.bsky.social shared their research at our recent EB Expert panel workshop.
Powerful to see researchers engaging with those impacted by #EB, ensuring their work is relevant and shaped by lived experiences.
#PPI
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!
24.04.2025 11:31 — 👍 2 🔁 1 💬 0 📌 0
Debra's Head of Research @sineadhickey.bsky.social and Registry Coordinator Ms Lara Cutlar from NISR solutions at the
@rarediseasectn.bsky.social Conference. They presented on the #EBregistry. A resource for driving progress in #EBcare and #EBresearch.
@hrbireland.bsky.social @hrci.bsky.social
