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Debra - The Butterfly Skin Charity

@debraireland.bsky.social

84 followers 31 following 49 posts

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

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Debra - The Butterfly Skin Charity @debraireland.bsky.social · Dec 3

Tough is a fight when living with epidermolysis bullosa (EB), a condition that makes skin as fragile as a butterfly's wing.

Tough is everyone living with #EB. They need action, not sympathy.

📽️Colin Farrell shares the raw, unapologetic truth about this debilitating disease.

👉 debra.ie/what-is-eb

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Debra - The Butterfly Skin Charity @debraireland.bsky.social · 3d

📢 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

Debra - The Butterfly Skin Charity @debraireland.bsky.social · 4d

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

Debra - The Butterfly Skin Charity @debraireland.bsky.social · 4d

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

Debra - The Butterfly Skin Charity @debraireland.bsky.social · 4d

"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

Debra - The Butterfly Skin Charity @debraireland.bsky.social · 4d

“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

Debra - The Butterfly Skin Charity @debraireland.bsky.social · 4d

“You are punished in every single way.” - Amanda, living with EB.

Powerful testimony at Leinster House today.

#EB #butterflyskin #EBbutterflyreview #EBAwarenessWeek

Debra - The Butterfly Skin Charity @debraireland.bsky.social · 4d

“This is not just a report, it’s a lifeline for the EB community.”

#EB #butterflyskin #EBbutterflyreview #EBAwarenessWeek

Debra - The Butterfly Skin Charity @debraireland.bsky.social · 4d

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

Debra - The Butterfly Skin Charity @debraireland.bsky.social · 4d

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

Debra - The Butterfly Skin Charity @debraireland.bsky.social · 4d

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

Debra - The Butterfly Skin Charity @debraireland.bsky.social · 6d

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...

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Debra - The Butterfly Skin Charity @debraireland.bsky.social · Sep 23

📢 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

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Debra - The Butterfly Skin Charity @debraireland.bsky.social · Jul 15

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

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Debra - The Butterfly Skin Charity @debraireland.bsky.social · Jul 10

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

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Debra - The Butterfly Skin Charity @debraireland.bsky.social · Jul 2

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

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Reposted by Debra - The Butterfly Skin Charity

Arlene Harris @arleneharris.bsky.social · Jun 13

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...

‘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...

www.independent.ie

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Debra - The Butterfly Skin Charity @debraireland.bsky.social · Jun 24

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

Debra - The Butterfly Skin Charity @debraireland.bsky.social · Jun 20

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:

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Debra - The Butterfly Skin Charity @debraireland.bsky.social · Jun 17

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

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Debra - The Butterfly Skin Charity @debraireland.bsky.social · Jun 12

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...

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Debra - The Butterfly Skin Charity @debraireland.bsky.social · Jun 3

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

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Debra - The Butterfly Skin Charity @debraireland.bsky.social · May 29

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

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Debra - The Butterfly Skin Charity @debraireland.bsky.social · May 23

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

Debra - The Butterfly Skin Charity @debraireland.bsky.social · May 20

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

Debra - The Butterfly Skin Charity @debraireland.bsky.social · May 13

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...

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