We are the butterfly skin charity. Uniting for change for everyone living with epidermolysis bullosa (EB). Registered charity (CHY 8703/RCN 20021726)
Dublin, Ireland
Joined November 2009
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- Following1.3K
- Followers6K
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When disability isn't visible, often support isn't either. A big thank you to @PaulMcauliffe for his support of the EB community to have access to much needed disability parking. You can add your support here debra.ie. @DarraghOBrienTD @Dept_Transport
🦇 Happy Halloween!
Don’t miss Ken's Halloween House of Horrors!
Open 4–9pm tonight at A96NH73, Killiney. 💀
This is Ken’s 17th year supporting Debra! 🧡
Huge thanks to Ken & his family for supporting people living with EB. 🦋
#happyhalloween
A huge thank you to all the schools, gyms and sports clubs who went Inside Out for EB! We are overwhelmed with your support.🧡
Your energy, spirit, and generosity are helping families living with EB feel seen, supported, and never alone.
debra.ie/insideout
#insideoutforEB
Last week, we launched the EB Butterfly Review at Leinster House. Over 30 people attended, including several TDs who committed to form an all-party interest group to drive change.
Huge thanks to @EY_Ireland for partnering with us.
👉Download the report: debra.ie/eb-research/butterf…
Grateful to the EB community and every supporter who helps us keep pushing. Together, we will make sure everyone living with EB gets the care and dignity they deserve.
🦋Special thanks to our Report funders: @KrystalBiotech @ChiesiGRD @TheIrelandFunds The Tom Cunningham Trust
Thanks @AnneRabbitte @PaulMcauliffe @padraigosull @MMurphyOMahony for coming to our EB Butterfly Review Launch at Leinster House. Your support matters to the EB community who showed up in force! We look forward to your ongoing support as we begin the process of implementation.
Debra - The Butterfly Skin Charity retweeted
A truly remarkable woman.
Amanda Nugent, a Wexford mother, shared her lived experience of #EB at our EB Butterfly Review launch yesterday at Leinster House. Thanks @GeorgeLawlorTD for coming and supporting Amanda's requests. We look forward to your ongoing help as we begin the process of implementation.
A huge thank you to @PaulMcauliffe for the continuous support and for hosting us at the Leinster House yesterday to launch our EB Butterfly Review, addressing the systemic gaps in EB care and support services. Together, we can shape a better policy for people living with #EB.
Amanda Nugent, a Wexford mother, shared her lived experience of #EB at our EB Butterfly Review launch yesterday at Leinster House. Thanks @GeorgeLawlorTD for coming and supporting Amanda's requests. We look forward to your ongoing help as we begin the process of implementation.
Thank you so much for supporting Inside Out and everyone living with butterfly skin. 🦋
Always a pleasure to visit our hard working researchers on EB at @TissueEngDublin!
#InsideOutForEB
TERG researchers held a bake sale yesterday to raise funds for the epidermolysis bullosa charity, @debraireland! We were delighted to have both Cheryl and Konstantina from debra Ireland with us in RCSI yesterday to discuss the charity's wonderful work!
Everyone (including Walt 🐾) looks fantastic. 😍
Thank you all so much for supporting Inside Out and everyone living with butterfly skin. 🦋 🧡 – at Dublin City, Ireland
Today, staff, students and Walt in St Kevins supported EB day by wearing our jumpers inside out, we also raised vital funds for @debraireland . Well done to all 🦋 @ddletb
📢 Today is Inside Out Day! Hundreds are turning their clothes inside out for everyone living with butterfly skin. And so are we.
We’re in the Oireachtas presenting the #EBButterflyReview to government, showing where EB care in Ireland needs change.
#InsideOutForEB
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 – at Dublin City, Ireland
Ring-fenced, annual funding would make a world of difference to the EB community.
We are working with the Government and the @HSELive to make it happen.
#EB #butterflyskin #EBbutterflyreview #EBAwarenessWeek – at Dublin City, Ireland
Debra - The Butterfly Skin Charity retweeted
Today:
Latest following last night's protests in Citywest - @colmanos
@MichealLehane reflects on the final Presidential Debate of the campaign
@debraireland reports shows 'serious gaps' in care of people with skin condition EB
& Ireland becomes a member of CERN
Debra - The Butterfly Skin Charity retweeted
A serious lack of understanding by the State of what it means to live with the rare and painful skin condition, Butterfly Skin/EB. A #Wexford mother, Amanda Nugent, will be speaking in the Dáil shortly. Here’s her story👇🏼@debraireland independent.ie/regionals/wex…
“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 – at Dublin City, Ireland
“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 – at Dublin City, Ireland
“You are punished in every single way.”
Powerful testimony from Amanda Nugent, who lives with EB, at Leinster House.
#EB #butterflyskin #EBbutterflyreview #EBAwarenessWeek
“This is not just a report - i’s a lifeline for the EB community.” @EY_Ireland @HSELive
#EB #butterflyskin #EBbutterflyreview #EBAwarenessWeek
