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charitydebra.bsky.social
DEBRA is a UK national medical research charity and patient support organisation for people living with the rare, extremely painful, genetic skin blistering condition, epidermolysis bullosa (EB). Find out more: https://bit.ly/4jaRfQG
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A few ways you can make a difference to people living with epidermolysis bullosa (EB) this #RandomActsOfKindnessDay! 💙 Get involved 👉 bit.ly/3X3R7sO Thank you to all our wonderful supporters. With your help we can get one step closer to a world where no one has to suffer with the pain of EB.

submitted 20 days ago • 0 comments

This #InternationalDayOfWomenAndGirlsInScience, meet our researcher Dr Giovana Carrasco, a research fellow working at The University of Edinburgh 🔬 Giovana is working on a project which aims to understand the growth and spread of skin cancer in KEB. Read more about Giovana's research 👇

submitted 26 days ago • 0 comments

Thank you to the team at @charitydebra.bsky.social for hosting me last week. It was great to catch up about their vital work, and hear more about what can be done to support those living with epidermolysis bullosa

submitted 26 days ago • 1 comment

Speaker announcement! 🙌 Our ambassador Daval will be speaking at our #RareDisease 101 webinar on 25th February! Daval will be talking about his experiences of EB and what patient advocacy groups like @charitydebra.bsky.social bring to people with #rareconditions. www.m4rd.org/event/rare-d...

submitted 27 days ago • 0 comments

On Friday we welcomed our new MP for Bracknell, Peter Swallow (@peter4bracknell.bsky.social), to our head office. We'd like to thank Peter for taking the time out of his busy schedule and for the interest he has shown in epidermolysis bullosa (EB) and DEBRA. Read more 👉 bit.ly/41aMdMI

submitted 27 days ago • 0 comments

This #WorldCancerDay, we’re highlighting the vital research projects we fund to understand more about the progression of cancer in EB, and to investigate opportunities for future drug development to treat skin cancer. Read more 👇

submitted 33 days ago • 0 comments

"My first memory of my EB was when I was around 3 years old. I remember attending a wart clinic to get what they thought at that the time were warts on my hands and fingers removed." Read our member Lisa's blog to hear more about her life with dominant dystrophic EB (DDEB) 👇

submitted 37 days ago • 0 comments

On behalf of everyone at DEBRA, we'd like to wish our Royal Patron, HRH The Duchess of Edinburgh a very happy 60th birthday! 🎉 We're so grateful for the Duchess' ongoing support for DEBRA and our mission to #StopThePain for people living with EB. Read more: bit.ly/4apbllY

submitted 48 days ago • 0 comments

Did you watch our DEBRA ambassador, Isla Grist, on BBC Breakfast this morning? The piece showed Emma and David Webber visiting Isla at her home in the Scottish Highlands to see her new wheelchair, part-funded by The Barnaby Webber Foundation and DEBRA. Watch the video below!

submitted 52 days ago • 0 comments

EB simplex (EBS) is the most common form of EB. Approximately 70% of the EB community live with EBS. EBS is often invisible to others, meaning those affected often need to explain it repeatedly, even to healthcare professionals. Read more about EB simplex: bit.ly/3C9c6mu

submitted 54 days ago • 0 comments

👩‍🔬 Meet the faces behind EB research! 💡 Ever wondered what goes on behind the scenes in EB research? Our research blog gives you a chance to meet the amazing researchers who work tirelessly to improve the quality of life for people living with EB. 👉 Read their stories here: bit.ly/3VOtUKr

submitted 61 days ago • 0 comments

"On a school day, I had to wake up, burst blisters, do dressings, go to school, and come home. I always took my wheelchair with me in case my feet turned bad to the point where I couldn’t walk." Read our member Daval's blog to hear more about his journey through education with EB 👉 bit.ly/3ZSXG3c

submitted 86 days ago • 0 comments

What is EB? EB is a group of rare and incredibly painful genetic skin conditions that cause the skin to blister and tear at the slightest touch. With skin as fragile as a butterfly’s wings, EB is often referred to as ‘butterfly skin’. 🦋 Find out more: bit.ly/3OIwqxN

submitted 93 days ago • 0 comments

Whatever the social media platform, we're here for people living with the rare, extremely painful, genetic skin blistering condition, epidermolysis bullosa (EB) also known as ‘butterfly skin’. Leave a butterfly emoji below to say hello! 👇🦋

submitted 100 days ago • 4 comments