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

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

📢 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

"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