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

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

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

Evento Solidario Piel de Mariposa. Y ahí estuvimos abriendo el evento con el ritmo y la alegría de nuestros Tambores.
#PieldeMariposa #butterflyskin #Debra #Batucada #BatucadaSolidaria #BatucadaAljarafe #BatucadaSevilla #Sevilla #Aljarafe #CasaMoza #G&BEventos

Streaming tonight at 8:30 PM EST. Show these families love and help spread awareness for EB! Follow me on my art journey, help me reach beyond borders. 💜Kiki
#artist #artstreamer #art #ebawareness #butterflychildren #butterflyskin #Tiktoklive #fypシ #family #friends
www.tiktok.com/live/event/7...

Finally some good news! #debraUK #debra #butterflychildren #ebawareness #health #medical #children #fragileskin #butterflyskin

www.linkedin.com/posts/debra-...

Wearing hope, strength, and courage on my sleeve today. Together we fight for a cure for Epidermolysis Bullosa — one shirt, one voice, one family at a time
sleepingangeltreasures.com/products/epi...

#EpidermolysisBullosa #EBAwareness #EBWarrior #ButterflySkin #RareDiseaseAwareness #TogetherWeFight

"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 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

2/16 Epidermolysis bullosa, called "butterfly skin," affects children whose skin tears and blisters from minimal contact.

Wounds heal slowly or not at all, leaving skin thinner and more fragile with each injury.

For years, hope came only in gauze and bandages.

#ButterflySkin #RareDiseases