Top Tweets for #EBButterflyReview
📢 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
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
“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.”
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
We are asking 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
The EB Butterfly Review was the focus of discussion for our EB Expert Workshop. 🦋 EB experts (made up of people impacted by EB) shared valuable feedback on the project.
Read the report👉 https://t.co/VjWwe7W8X9
#PPI #EBButterflyReview #epidermolysisbullosa
🚨LAST CHANCE!🚨
The EB Butterfly Review survey closes this Friday, Sept 27th! Help improve EB care in Ireland & you could win €500!💵
If you're part of the EB community, don’t miss out!
Take the survey👉email: [email protected]
#EBButterflyReview #YourVoiceMatters #EBCare
🚨Reminder!!🚨
The EB Butterfly Review survey is STILL OPEN!🦋
Help improve EB care in Ireland and you could WIN €500!💵If you're part of the EB community, don’t miss this opportunity!
Take the survey👉email: [email protected]
#EBButterflyReview #YourVoiceMatters #EBCare
🚨Reminder!!🚨
The EB Butterfly Review survey is OPEN.🦋
Help improve EB care in Ireland & you could WIN €500! 💵
If you're part of the EB community, don't miss your chance to take the survey 👉 email: [email protected]
#EBButterflyReview #YourVoiceMatters #EBCare
🚀 The EB Butterfly Review survey is now LIVE! 🎉
Your input is crucial to improving EB care in Ireland, and you could WIN €500! 💵 🌟
If you are part of the EB community take our survey today.
👉email: [email protected]
#EBButterflyReview #YourVoiceMatters #EBCare
🚨 Exciting news! We're launching The EB Butterfly Review survey soon! Your feedback is crucial for improving EB care in Ireland. Plus, you could win €500! 💵 Stay tuned for the survey link!🙌
Learn more: https://t.co/MxUFiEGStv
#EBButterflyReview #YourVoiceMatters #EBCare
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