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#EBAwarenessWeek
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DEBRA UK
DEBRA UK
@charitydebra.bsky.social
4 months ago
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This #EBAwarenessWeek, we want to say a huge thank you for your support to help us #FightEB and work towards our vision of a world where no one suffers with EB. 🦋

Reshare this post & find out how you can get involved and support the EB community here: https://bit.ly/4grgP1S

#EBAW #EBAW2025

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rareLife solutions
rareLife solutions
@rarelife-solutions.bsky.social
5 months ago
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#EBAwarenessWeek is Oct. 25-31—a time to support the thousands living with #EpidermolysisBullosa, a painful & often fatal disorder affecting about 1 in 20,000 births in the US.
rareLife bridges science & patient stories to drive better outcomes.
contactus@rarelifesolutions.com
#EBWeek #WeFightEB

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Debra - The Butterfly Skin Charity
Debra - The Butterfly Skin Charity
@debraireland.bsky.social
5 months ago
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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

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Debra - The Butterfly Skin Charity
Debra - The Butterfly Skin Charity
@debraireland.bsky.social
5 months ago
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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

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Debra - The Butterfly Skin Charity
Debra - The Butterfly Skin Charity
@debraireland.bsky.social
5 months ago
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"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

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Debra - The Butterfly Skin Charity
Debra - The Butterfly Skin Charity
@debraireland.bsky.social
5 months ago
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“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

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Debra - The Butterfly Skin Charity
Debra - The Butterfly Skin Charity
@debraireland.bsky.social
5 months ago
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“You are punished in every single way.” - Amanda, living with EB.

Powerful testimony at Leinster House today.

#EB #butterflyskin #EBbutterflyreview #EBAwarenessWeek

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Debra - The Butterfly Skin Charity
Debra - The Butterfly Skin Charity
@debraireland.bsky.social
5 months ago
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“This is not just a report, it’s a lifeline for the EB community.”

#EB #butterflyskin #EBbutterflyreview #EBAwarenessWeek

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Debra - The Butterfly Skin Charity
Debra - The Butterfly Skin Charity
@debraireland.bsky.social
5 months ago
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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

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Debra - The Butterfly Skin Charity
Debra - The Butterfly Skin Charity
@debraireland.bsky.social
5 months ago
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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

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