🔬 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
Find out more: https://bit.ly/4aft801
#DEBRAUK #EBResearch #EBAwareness #StopThePain
June 8, 2026 at 3:26 PM
🔬 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
Find out more: https://bit.ly/4aft801
#DEBRAUK #EBResearch #EBAwareness #StopThePain
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.
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
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.
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.
🔬 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
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
🔬 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
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
The Goodman’s retired, the LD people managed to neutralize the lab ( who gets funding) and here we are in 2025. There was EBResearch then but the teaching prep for teachers began to not include reading instruction. 50 years later 3 cueing? There was a time when it was done correctly. Education wars
November 12, 2025 at 8:30 AM
The Goodman’s retired, the LD people managed to neutralize the lab ( who gets funding) and here we are in 2025. There was EBResearch then but the teaching prep for teachers began to not include reading instruction. 50 years later 3 cueing? There was a time when it was done correctly. Education wars
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
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
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
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
🧬 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
📅 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
Research and Health webinars
Our Research and Health webinar series feature a variety guests speaking live about their expertise in EB research and healthcare.
bit.ly
September 14, 2025 at 2:51 PM
🧬 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
📅 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
🔁 @berniewilson retweeted
@EBResearch GAME ON: The final round of the Vedder Cup starts tonight, a series backed by @eddievedder to fund life-changing EB research.
It’s baseball with impact. 3 FDA-approved treatments... and counting.
🎟️ https://t.co/r8O9y03mkL | @padres @mariners
📸:
@EBResearch GAME ON: The final round of the Vedder Cup starts tonight, a series backed by @eddievedder to fund life-changing EB research.
It’s baseball with impact. 3 FDA-approved treatments... and counting.
🎟️ https://t.co/r8O9y03mkL | @padres @mariners
📸:
Tweet
🔁 @berniewilson retweeted
@EBResearch GAME ON: The final round of the Vedder Cup starts tonight, a series backed by @eddievedder to fund life-changing EB research.
It’s baseball with impact. 3 FDA-approved treatments... and counting.
🎟️ https://t.co/r8O9y03mkL | @padres @mariners
📸:
twitter.com
August 25, 2025 at 9:48 PM
🔁 @berniewilson retweeted
@EBResearch GAME ON: The final round of the Vedder Cup starts tonight, a series backed by @eddievedder to fund life-changing EB research.
It’s baseball with impact. 3 FDA-approved treatments... and counting.
🎟️ https://t.co/r8O9y03mkL | @padres @mariners
📸:
@EBResearch GAME ON: The final round of the Vedder Cup starts tonight, a series backed by @eddievedder to fund life-changing EB research.
It’s baseball with impact. 3 FDA-approved treatments... and counting.
🎟️ https://t.co/r8O9y03mkL | @padres @mariners
📸:
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
🔗Read here: debra.ie/news/our-lat...
#HealthResearchMatters #PPI #EB
July 15, 2025 at 3:30 PM
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
🔗Read here: debra.ie/news/our-lat...
#HealthResearchMatters #PPI #EB
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
#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
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
#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
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
Learn more👉 www.debra.ie/eb-research/...
#HealthReserchMatters #EB #Registries
June 24, 2025 at 1:38 PM
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
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:
📝Read the report: t.co/veC46NvD0b
👇See the top topics from both #livedexperience & #HCPs:
June 20, 2025 at 9:23 AM
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:
📝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
👉 www.debra.ie/news/eb-comm...
@charitydebra.bsky.social @jameslindalliance.bsky.social
June 17, 2025 at 1:22 PM
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
👉 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...
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
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...
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...
#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!💙🦋
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
#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!💙🦋
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!💙🦋
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
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
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
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
Find out what happened and read the workshop report here 👉 www.debra.ie/news/united-...
#PPI #EB
May 20, 2025 at 12:10 PM
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
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...
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
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...
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...
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.
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
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.
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.
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
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
April 25, 2025 at 5:13 PM
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
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
@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
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
@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
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
@rarediseasectn.bsky.social Conference. They presented on the #EBregistry. A resource for driving progress in #EBcare and #EBresearch.
@hrbireland.bsky.social @hrci.bsky.social
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
Pearl Jam frontman will also offer 'an intimate acoustic performance' after 6/12 screening. #EddieVedder #EB #TribecaFest #EBResearch #Doc
Eddie Vedder To Premiere EB Research Doc At Tribeca Fest
Vedder will also offer "an intimate acoustic performance" after the screening.
www.spin.com
April 16, 2025 at 6:17 PM
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
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
Learn more👉 bit.ly/SpecialScaff...
#HealthResearchMatters #EB
April 10, 2025 at 3:11 PM
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
Learn more👉 bit.ly/SpecialScaff...
#HealthResearchMatters #EB