#ebresearch
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debraireland.bsky.social
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
April 10, 2025 at 3:11 PM
debraireland.bsky.social
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
March 25, 2025 at 6:28 PM
debraireland.bsky.social
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
iua-official.bsky.social Irish Universities Association @iua-official.bsky.social · Mar 31
📢 At our #BetterIreland campaign launch in
@maynoothuniversity.ie, the NMR Spectrometer showed the power of investing in research. A €550K upgrade from the HEA extended its life - fuelling breakthroughs at a fraction of the €1.65M replacement cost 👉 bit.ly/4iWMr0M

#InvestInHigherEd
April 2, 2025 at 7:30 AM
debraireland.bsky.social
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...
May 13, 2025 at 1:18 PM
debraireland.bsky.social
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
April 24, 2025 at 11:27 AM
debraireland.bsky.social
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:
June 20, 2025 at 9:23 AM
debraireland.bsky.social
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
June 3, 2025 at 12:30 PM
jeffamentsarmy.bsky.social
#repost • @ebresearch
Huge thanks to @rollingstone for shining a light on “Matter of Time”, a powerful new documentary capturing Eddie Vedder’s unforgettable Seattle shows & the mission behind them — the fight to cure EB.

We can’t wait for the film’s premiere at the Tribeca Festival this week!💙🦋
June 9, 2025 at 10:17 PM
charitydebra.bsky.social
🔬 We’re proud to be one of 89 charities awarded a share of @nihr.bsky.social's £37m investment, supporting 800+ early-career researchers. 🩵

Find out more: https://bit.ly/4aft801

#DEBRAUK #EBResearch #EBAwareness #StopThePain
June 8, 2026 at 3:26 PM
jeffamentsarmy.bsky.social
Were you at this show?
#Repost @geoffwhitman
PEARL JAM IN LAS VEGAS NIGHT 2 (2024)
@pearljam was another unreal show: fans on the rail surprising @eddievedder with a wonderful donation for @ebresearch seen in picture 1 here, not a dry eye in the house! @leicastoreny 📷: @geoffwhitman
June 25, 2025 at 3:34 PM
debraireland.bsky.social
👥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
February 5, 2025 at 1:39 PM
debraireland.bsky.social
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
June 24, 2025 at 1:38 PM
debraireland.bsky.social
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
June 17, 2025 at 1:22 PM
debraireland.bsky.social
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
maynoothuniversity.ie Maynooth University @maynoothuniversity.ie · Mar 31
The Minister for Further and Higher Education, Research Innovation and Science James Lawless visited MU's campus on Friday where he met with staff and students, viewed research equipment, and officially opened the refurbished Arts Building.

@researchireland.bsky.social
@iua-official.bsky.social
April 1, 2025 at 7:09 PM
debraireland.bsky.social
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
May 20, 2025 at 12:10 PM
debraireland.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...
June 12, 2025 at 11:09 AM
debraireland.bsky.social
Exciting #EBresearch!🔬

Researchers @fjobrien.bsky.social and Post-doc Marko Dobricic at @tissueengdublin.bsky.social @rcsi.bsky.social are developing a gene-activated patch to improve wound healing for individuals impacted by #RDEB.🦋🧬

👉 www.debra.ie/news/a-break...

#HealthResearchMatters #EB
March 11, 2025 at 6:44 PM
charitydebra.bsky.social
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
October 29, 2025 at 7:23 PM
charitydebra.bsky.social
🔬 New research to protect sight in people living with JEB

We’re delighted to be funding a 4‑year research study focused on protecting against sight loss in patients with JEB, in partnership with @fightforsight.bsky.social

Read more: https://bit.ly/49107Vc

#DEBRAUK #EBResearch #EBAwareness #JEB
April 22, 2026 at 1:53 PM
debraireland.bsky.social
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
July 15, 2025 at 3:30 PM
rarediseasectn.bsky.social
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!
debraireland.bsky.social Debra - The Butterfly Skin Charity @debraireland.bsky.social · Apr 24
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
April 24, 2025 at 11:31 AM
debraireland.bsky.social
📣Debra is committed to ensuring the voices of those affected by #epidermolysisbullosa are heard.

Join us for the next #EBExpertPanel workshop, focusing on ongoing #EBresearch.👥🔬

Your voice matters.

Register👉 www.debra.ie/events/join-our-upcoming-eb-expert-panel-2/

#PPI #HealthResearchMatters #EB
February 18, 2025 at 12:08 PM
marinersbot.bsky.social
RT @MsSEAchange: The #VedderCup is back 🙌

We’re proud to continue supporting @EBResearch, co-founded by Eddie and Jill Vedder, with a portion of this weekend’s 50/50 Raffle proceeds supporting the fight to find a cure for EB, a life-threatening skin disease affecting children from birth.
May 16, 2026 at 1:01 AM
jeffamentsarmy.bsky.social
2/3
Donate now to support The Vitalogy Foundation and help @ebresearch find a cure for Epidermolysis Bullosa.
You could win round trip travel to NYC, hotel, 2 VIP passes to the Matter of Time premiere, the opportunity to walk the Red Carpet & see Eddie perform a private acoustic set, and more.
April 25, 2025 at 5:39 PM