In 40 years, DEBRA UK has invested £22m in pioneering research 🧬

We have undertaken 164 projects, worked with 127 researchers in 63 research sites across 16 countries.

Read more in our latest research round-up: https://bit.ly/4njcikI

#EBAwarenessWeek2025 #FightEB #EBResearch #DEBRAUK

Research and Health webinars Our Research and Health webinar series feature a variety guests speaking live about their expertise in EB research and healthcare.

🧬 Join us for our next Research & Health Webinar!

📅 Wednesday 17th September, 1pm (BST)

This month, we're joined by Dr Josefine Hirschfeld and Dr Dario Balacco who will share their latest research & insights into microbiomes in EB, followed by a Q&A.

https://bit.ly/45SbKNi

#DEBRAUK #EBResearch

We’re proud to share our 2025 Research Report — showing how your support is driving #EBresearch that brings real hope, improves lives, and ensures the voice of the #EBcommunity is at the heart of the research process.

🔗Read here: debra.ie/news/our-lat...

#HealthResearchMatters #PPI #EB

If you or a loved one lives with #epidermolysisbullosa in Ireland, joining the #EBRegistry is a powerful way to support #EBresearch and advance #EBcare.

Learn more👉 www.debra.ie/eb-research/...

#HealthReserchMatters #EB #Registries

In 2024, the global #EB community spoke — and now we have the top #EBresearch priorities, chosen by the #EBcommunity, for the #EBcommunity. @charitydebra.bsky.social @jameslindalliance.bsky.social

📝Read the report: t.co/veC46NvD0b

👇See the top topics from both #livedexperience & #HCPs:

We’re excited to share the final reports on the #EB Priority Setting Partnership (PSP) — a global effort to identify what matters most in #EBresearch, shaped by people living with EB, families & clinicians.

👉 www.debra.ie/news/eb-comm...

@charitydebra.bsky.social @jameslindalliance.bsky.social

We're proud to support not just #EBresearch but also Clinical Practice Guidelines (CPGs) to improve #EBcare.

The latest CPG focuses on managing oesophageal strictures in inherited #EB and is now available to help clinicians worldwide improve care.

👉 www.debra.ie/news/new-cli...

Thanks to @sspcresearchcentre.bsky.social for a great Fireside Chat @ucddublin.bsky.social.

Dr Rob Elmes & Postdoc Hilal Kirpik joined our Head of Research, @sineadhickey.bsky.social to discuss #PPI in their #EBresearch - a project we’re co-funding with @researchireland.ie.

👉 bit.ly/SOWOBresearch

At our 6th #EB Expert workshop, lived experience led the way. The key areas of focus were advancing #EBresearch and evolving how Debra communicates with the #EBcommunity and the public.

Find out what happened and read the workshop report here 👉 www.debra.ie/news/united-...

#PPI #EB

Huge congrats to Prof. Wenxin Wang @ucddublin.bsky.social on winning the 2025 NovaUCD Innovation Award!🎉

We're proud to support his gene-editing therapy for #RDEB - offering real hope to those living with #EB.🦋👏

#EBResearch #epidermolysisbullosa

👉 bit.ly/UCD-Wang-Nov...

Win a trip to Eddie Vedder's Matter of Time documentary premiere at @Tribeca
Festival in NYC and watch Eddie perform a private acoustic set.
Donate now to support The Vitalogy Foundation and help @EBResearch find a cure for Epidermolysis Bullosa: fandiem.com/eddievedder
#EddieVedder #EBResearch

We're so glad you shared this brilliant work at the #RareResearch25 Conference! A great example of progress and hope for #EBcare and #EBresearch in #RareSkin disease. Thank you for joining us and for everything you contribute to advancing rare disease research!

Debra's Head of Research @sineadhickey.bsky.social and Registry Coordinator Ms Lara Cutlar from NISR solutions at the
@rarediseasectn.bsky.social Conference. They presented on the #EBregistry. A resource for driving progress in #EBcare and #EBresearch.

@hrbireland.bsky.social @hrci.bsky.social

From the entertainment community on Reddit: Eddie Vedder’s quest to help cure a rare disease subject of new documentary Explore this post and more from the entertainment community

My man! I raised $700 for EB research a few years ago. Jumped in to the Sound at Alki Beach. So glad they are doing this documentary to let the rest of the world know what him and Jill have been doing for years♥️
#music
#EBResearch
#pearljam

www.reddit.com/r/entertainm...

Eddie Vedder To Premiere EB Research Doc At Tribeca Fest Vedder will also offer "an intimate acoustic performance" after the screening.

Eddie Vedder To Premiere EB Research Doc At Tribeca Fest
Pearl Jam frontman will also offer 'an intimate acoustic performance' after 6/12 screening. #EddieVedder #EB #TribecaFest #EBResearch #Doc

Fantastic to see @fjobrien.bsky.social and Claudia on #IrelandAM with Elaine Crowley and Mark King. Shining a light on the #EBresearch we’re co-funding with @researchireland.bsky.social and further supported by @hrbireland.bsky.social.

Learn more👉 bit.ly/SpecialScaff...

#HealthResearchMatters #EB

Delighted to see Minister Lawless @maynoothuniversity.ie, learning about Prof Rob Elmes' team’s innovative research on spray-on, wash-off bandages. Highlighting the power of investing in #EBresearch. We co-funded this groundbreaking research with @researchireland.bsky.social.

#HealthResearchMatters

Exciting to see #EBresearch highlighted at @maynoothuniversity.ie where Minister Lawless visited the campus and met with researchers like Prof. Rob Elmes and his team, who are developing a treatment to improve the lives of people impacted by #EB.
@researchireland.bsky.social

👉 bit.ly/SOWOBresearch

Who knew a TV show could spark groundbreaking #ebresearch in Ireland?

After hearing Claudia Scanlon’s #EB story on @latelateshow.rte.ie, @fjobrien.bsky.social and team @rcsi.bsky.social @tissueengdublin.bsky.social are developing a patch to improve wound healing.

bit.ly/RCSI-gene-therapy-research

👥Join our #EBExpertPanel.

If you live with #epidermolysisbullosa, are a family member, friend, or carer - your experience matters to us. Help shape the future of #EBresearch and support in Ireland.

(Voluntary with reimbursement for time.)

👉 bit.ly/registerEBEx...

#PPI #HealthResearchMatters #EB