Sign in

Debra - The Butterfly Skin Charity

@debraireland.bsky.social
96 followers 31 following 51 posts

We are the butterfly skin charity. Uniting for change for everyone living with epidermolysis bullosa (EB). Registered charity (CHY 8703/RCN 20021726)

PostsRepliesMedia
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 25/02/2026
When disability isn't visible, often support isn't either. A big thank you to @paulmcauliffe.bsky.social for his support of the EB community to have access to much needed disability parking. You can find out more and add your support here debra.ie. @darraghobrientd.bsky.social
011
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 31/10/2025
🦇 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
000
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 22/10/2025
📢 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
000
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 22/10/2025
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
020
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 22/10/2025
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
020
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 22/10/2025
"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
000
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 22/10/2025
“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
000
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 22/10/2025
“You are punished in every single way.” - Amanda, living with EB. Powerful testimony at Leinster House today. #EB #butterflyskin #EBbutterflyreview #EBAwarenessWeek
000
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 22/10/2025
“This is not just a report, it’s a lifeline for the EB community.” #EB #butterflyskin #EBbutterflyreview #EBAwarenessWeek
000
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 22/10/2025
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
010
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 22/10/2025
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
011
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 22/10/2025
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
000
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 20/10/2025
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...
011
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 23/09/2025
📢 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
021
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 15/07/2025
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
021
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 10/07/2025
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
021
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 02/07/2025
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
032
Reposted by Debra - The Butterfly Skin Charity
Arlene Harris @arleneharris.bsky.social · 13/06/2025
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...
independent.ie
‘Sophia will do Irish dancing or football but afterwards it’s like her feet are burning’ – parents of ‘butterfly skin’ sufferer tell of brave daughter’s struggle
Like many teenagers, Sophia Dawson has a busy, active lifestyle and loves socialising, playing sport and dancing. But unlike others of her age, her passion for living life to the full leaves her in ex...
031
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 24/06/2025
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
030
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 20/06/2025
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:
053
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 17/06/2025
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
031
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 12/06/2025
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...
031
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 03/06/2025
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
042
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 29/05/2025
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
021
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 23/05/2025
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
030
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 20/05/2025
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
030
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 13/05/2025
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...
074
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 06/05/2025
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
030
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 29/04/2025
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
Researchers and individuals impacted by EB collaborating. Dr Marko Dobricic (RCSI)Dr Hilal Kirpik (Maynooth University) Professor Des Tobin (UCD)
082
Reposted by Debra - The Butterfly Skin Charity
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 24/04/2025
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!
021
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 24/04/2025
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
051
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 15/04/2025
Thanks to the med students @ucddublin.bsky.social and nursing students @dublincityuni.bsky.social for attending #EB talks by Debra’s Head of Research @sineadhickey.bsky.social. Grateful to these future medical professionals for their interest in EB and the specialised care people with EB need.🦋
041
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 10/04/2025
Fantastic to see @fjobrien.bsky.social and Claudia on #IrelandAM with Elaine Crowley and Mark King. Shining a light on the #EBresearch we’re co-funding with @researchireland.bsky.social and further supported by @hrbireland.bsky.social. Learn more👉 bit.ly/SpecialScaff... #HealthResearchMatters #EB
0103
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 02/04/2025
Delighted to see Minister Lawless @maynoothuniversity.ie, learning about Prof Rob Elmes' team’s innovative research on spray-on, wash-off bandages. Highlighting the power of investing in #EBresearch. We co-funded this groundbreaking research with @researchireland.bsky.social. #HealthResearchMatters
073
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 01/04/2025
Exciting to see #EBresearch highlighted at @maynoothuniversity.ie where Minister Lawless visited the campus and met with researchers like Prof. Rob Elmes and his team, who are developing a treatment to improve the lives of people impacted by #EB. @researchireland.bsky.social 👉 bit.ly/SOWOBresearch
031
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 01/04/2025
We are so grateful to you and your team for all the incredible work you're doing for people living with EB. Thank you so much for your hard work. Excited to see the results. 🙏
020
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 25/03/2025
Who knew a TV show could spark groundbreaking #ebresearch in Ireland? After hearing Claudia Scanlon’s #EB story on @latelateshow.rte.ie, @fjobrien.bsky.social and team @rcsi.bsky.social @tissueengdublin.bsky.social are developing a patch to improve wound healing. bit.ly/RCSI-gene-therapy-research
076
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 13/03/2025
Final-year @ucc.ie OT students are conducting an anonymous survey to understand the experiences and needs of parents with a chronic illness, disability or mental health difficulty. The survey takes approx. 10-15 mins. 👉 ucc.qualtrics.com/jfe/form/SV_... #HealthResearchMatters
020
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 11/03/2025
Exciting #EBresearch!🔬 Researchers @fjobrien.bsky.social and Post-doc Marko Dobricic at @tissueengdublin.bsky.social @rcsi.bsky.social are developing a gene-activated patch to improve wound healing for individuals impacted by #RDEB.🦋🧬 👉 www.debra.ie/news/a-break... #HealthResearchMatters #EB
021
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 06/03/2025
Great news!🎉 @ema.europa.eu recommended Krystal Biotech’s topical #genetherapy Vyjuvek for use from birth in the EU, for #DEB. Parents/carers can administer it. Debra will advocate for access ASAP but it may be years before we see it in Ireland. 👉 bit.ly/EMArecommend...
020
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 25/02/2025
Debra and @charitydebra.bsky.social are delighted to support a clinical trial led by @pallerlab.bsky.social @nufeinbergmed.bsky.social. The trial explores #repurposing Dupilumab - used for eczema - to treat itch, blistering, and pain in all types of #EB. Read more 👉 bit.ly/Dupilumabtot...
052
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 24/02/2025
Congrats to Debra ambassador Colin Farrell on winning the SAG Awards for The Penguin! 🏆 Colin has been a wonderful friend and supporter of Debra Ambassador Emma Fogarty and the EB community raising huge awareness and funds. Thank you Colin and congratulations. 🧡 #SAGAwards #ColinFarrell
irishtimes.com
SAG awards 2025: Colin Farrell wins for The Penguin as Demi Moore, Timothée Chalamet and Conclave take big prizes
Colin Farrell pays moving tribute to sons James and Henry ‘who have made my life so much more special than I ever truly thought possible’
040
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 18/02/2025
📣Debra is committed to ensuring the voices of those affected by #epidermolysisbullosa are heard. Join us for the next #EBExpertPanel workshop, focusing on ongoing #EBresearch.👥🔬 Your voice matters. Register👉 www.debra.ie/events/join-our-upcoming-eb-expert-panel-2/ #PPI #HealthResearchMatters #EB
021
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 11/02/2025
Study funded by Debra Ireland and Debra Austria, led by Prof Andrew South @Thomas Jefferson University, targeting long-term inflammation and scarring in #EB tested drug combos to reduce skin damage and fibrosis. Early results are promising. 👉 bit.ly/TargetingLong-termInflammationandScarringInEB
021
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 05/02/2025
👥Join our #EBExpertPanel. If you live with #epidermolysisbullosa, are a family member, friend, or carer - your experience matters to us. Help shape the future of #EBresearch and support in Ireland. (Voluntary with reimbursement for time.) 👉 bit.ly/registerEBEx... #PPI #HealthResearchMatters #EB
041
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 28/01/2025
🧬Study funded by Debra Ireland and @charitydebra.bsky.social, led by Dr Yanling Liao, found that interleukin-1 drives inflammation, scarring, and cancer risk in #RDEB. Early targeting may help prevent or slow cancer development. Read more👉 bit.ly/ImmuneSystemInvolvementRDEB #HealthResearchMatters
040
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 23/01/2025
My name is Grace. I am the Research Officer at Debra, the charity supporting individuals impacted by #epidermolysisbullosa (EB). I'm proud to work for an organisation supporting #EB research projects; helping to bring potential treatments closer to a reality. #healthresearchmatters
060
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 15/01/2025
Abstract submissions are now open for the 2025 Rare Disease Research Conference 🧬📢. @rarediseasectn.bsky.social Share your research or case studies and be part of advancing knowledge in the rare disease community 🌍. #EpidermolysisBullosa #EB #HealthResearchMatters
031
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 10/01/2025
📢The Cross-Border Access to Paediatric Clinical Trials Working Group (Enpr-EMA), wants to hear from parents of children living with a condition. They’re conducting a 12-15 min survey to analyse language barriers in cross-border clinical trials. Survey👉 bit.ly/Survey_Paren...
020
Debra - The Butterfly Skin Charity @debraireland.bsky.social · 06/01/2025
Every day, people with #EB face challenges most of us can’t imagine. We asked Fiona what living with EB is like and what Debra means to her. With the kindness of Debra supporters like you by our side, we can keep making a difference for Fiona and others like her. 🦋 #epidermolysisbullosa
030