Wonderful news for people who live with #EpidermolysisBullosa! 🤗
Epidermolysis bullosa (EB) is so rare, most pediatricians may only see one patient with EB in their entire career. But here, rare is common, and Dr. Anna Bruckner co-leads a clinic where we’ve treated about 140 patients. #EpidermolysisBullosa #DermSky
FDA Approval of Treatment for EB
First-ever topical treatment for rare skin disease.
www.childrenscolorado.org
February 11, 2025 at 12:30 AM
Wonderful news for people who live with #EpidermolysisBullosa! 🤗
On #RareDiseaseDay I’m proud to have 2 amazing PhD students @uwdermatology.bsky.social building organotypic models of #HaileyHailey disease & #EpidermolysisBullosa to find new therapies. Thanks to @pnrigenetics.bsky.social for hosting an outstanding symposium for clinicians, researchers & advocates.
March 1, 2025 at 1:57 AM
On #RareDiseaseDay I’m proud to have 2 amazing PhD students @uwdermatology.bsky.social building organotypic models of #HaileyHailey disease & #EpidermolysisBullosa to find new therapies. Thanks to @pnrigenetics.bsky.social for hosting an outstanding symposium for clinicians, researchers & advocates.
Soda found a bucket of scabs & glued them to an action figure. Years later the toy is brought to life by the Fartmeister, and thus: Meet Scabatha. Learn more at sifillis.com!
#book #books #illustration #illustrationart #zine #zines #sifilis #90s #scab #scabs #booksky #cartoon #EpidermolysisBullosa
#book #books #illustration #illustrationart #zine #zines #sifilis #90s #scab #scabs #booksky #cartoon #EpidermolysisBullosa
March 27, 2025 at 12:38 AM
Soda found a bucket of scabs & glued them to an action figure. Years later the toy is brought to life by the Fartmeister, and thus: Meet Scabatha. Learn more at sifillis.com!
#book #books #illustration #illustrationart #zine #zines #sifilis #90s #scab #scabs #booksky #cartoon #EpidermolysisBullosa
#book #books #illustration #illustrationart #zine #zines #sifilis #90s #scab #scabs #booksky #cartoon #EpidermolysisBullosa
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...
My name is Grace. I am the Research Officer at Debra, the charity supporting individuals impacted by #epidermolysisbullosa (EB).
I'm proud to work for an organisation supporting #EB research projects; helping to bring potential treatments closer to a reality.
#healthresearchmatters
I'm proud to work for an organisation supporting #EB research projects; helping to bring potential treatments closer to a reality.
#healthresearchmatters
January 23, 2025 at 8:46 AM
My name is Grace. I am the Research Officer at Debra, the charity supporting individuals impacted by #epidermolysisbullosa (EB).
I'm proud to work for an organisation supporting #EB research projects; helping to bring potential treatments closer to a reality.
#healthresearchmatters
I'm proud to work for an organisation supporting #EB research projects; helping to bring potential treatments closer to a reality.
#healthresearchmatters
Wonderful start to summer @uwdermatology.bsky.social. Excited to welcome @uwsom-wwami.bsky.social med student Porter & @gonzagauniversity.bsky.social undergrad Michael for summer projects on rare #skin #blistering diseases #HaileyHailey & #EpidermolysisBullosa. Thanks to Arti for a delicious lunch!
July 12, 2025 at 3:41 AM
Wonderful start to summer @uwdermatology.bsky.social. Excited to welcome @uwsom-wwami.bsky.social med student Porter & @gonzagauniversity.bsky.social undergrad Michael for summer projects on rare #skin #blistering diseases #HaileyHailey & #EpidermolysisBullosa. Thanks to Arti for a delicious lunch!
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
1st time at Society for #Pediatric #Dermatology #SPD2025 mtg to share work from my lab @uwdermatology.bsky.social. Our new project models #EpidermolysisBullosa simplex which causes painful blistering but has no approved Rx despite approval for other forms. We are working to change that for patients.
July 24, 2025 at 6:31 PM
1st time at Society for #Pediatric #Dermatology #SPD2025 mtg to share work from my lab @uwdermatology.bsky.social. Our new project models #EpidermolysisBullosa simplex which causes painful blistering but has no approved Rx despite approval for other forms. We are working to change that for patients.
Why anxiety gotta be crazy tho. Having rare skin disorder isn’t easy #disabled #epidermolysisbullosa #eblife
October 20, 2024 at 12:33 AM
Why anxiety gotta be crazy tho. Having rare skin disorder isn’t easy #disabled #epidermolysisbullosa #eblife
Abstract submissions are now open for the 2025 Rare Disease Research Conference 🧬📢. @rarediseasectn.bsky.social
Share your research or case studies and be part of advancing knowledge in the rare disease community 🌍.
#EpidermolysisBullosa #EB #HealthResearchMatters
Share your research or case studies and be part of advancing knowledge in the rare disease community 🌍.
#EpidermolysisBullosa #EB #HealthResearchMatters
Reminder: The call for abstracts for the Rare Disease Research Conference 2025 is open! We invite submissions of case studies and rare disease research for consideration for poster presentation. Registration and full programme details to follow!
docs.google.com/forms/d/e/1F...
docs.google.com/forms/d/e/1F...
January 15, 2025 at 2:46 PM
Abstract submissions are now open for the 2025 Rare Disease Research Conference 🧬📢. @rarediseasectn.bsky.social
Share your research or case studies and be part of advancing knowledge in the rare disease community 🌍.
#EpidermolysisBullosa #EB #HealthResearchMatters
Share your research or case studies and be part of advancing knowledge in the rare disease community 🌍.
#EpidermolysisBullosa #EB #HealthResearchMatters
👥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
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
👥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
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
Insights from Pierre Coulombe: Bergson et al. (https://buff.ly/4gPt5ZA) report on variants in HMCN1 that co-segregate with and account for variations in disease severity in individuals suffering from #EpidermolysisBullosa simplex. https://buff.ly/41aGfuk
February 25, 2025 at 2:26 PM
Insights from Pierre Coulombe: Bergson et al. (https://buff.ly/4gPt5ZA) report on variants in HMCN1 that co-segregate with and account for variations in disease severity in individuals suffering from #EpidermolysisBullosa simplex. https://buff.ly/41aGfuk
People with #EB are missing the essential proteins that bind the skin's layers together, so even minor friction or trauma causes the skin to break, tear, and blister.
👉Learn more about the different types of EB: bit.ly/TypesofEB
#epidermolysisbullosa
👉Learn more about the different types of EB: bit.ly/TypesofEB
#epidermolysisbullosa
December 17, 2024 at 12:08 PM
People with #EB are missing the essential proteins that bind the skin's layers together, so even minor friction or trauma causes the skin to break, tear, and blister.
👉Learn more about the different types of EB: bit.ly/TypesofEB
#epidermolysisbullosa
👉Learn more about the different types of EB: bit.ly/TypesofEB
#epidermolysisbullosa
Good man Graeme Souness, highlighting this cruel disease and fundraising for EB. #EpidermolysisBullosa
#Liverpool #LFC
youtu.be/fvVWMX64Jy8?...
#Liverpool #LFC
youtu.be/fvVWMX64Jy8?...
Graeme Souness CBE and Isla Grist on Good Morning Britain
YouTube video by DEBRA UK
youtu.be
April 19, 2025 at 8:21 AM
Good man Graeme Souness, highlighting this cruel disease and fundraising for EB. #EpidermolysisBullosa
#Liverpool #LFC
youtu.be/fvVWMX64Jy8?...
#Liverpool #LFC
youtu.be/fvVWMX64Jy8?...
Tom Holland is a hero of mine and I will accept no other opinions on him.
He has done a great deal for people like me.
#epidermolysisbullosa
He has done a great deal for people like me.
#epidermolysisbullosa
December 24, 2024 at 12:02 AM
Tom Holland is a hero of mine and I will accept no other opinions on him.
He has done a great deal for people like me.
#epidermolysisbullosa
He has done a great deal for people like me.
#epidermolysisbullosa
Proud of Jess & Karina who won travel awards from Uplifting Athletes & UC Irvine Skin Bio Resource Ctr to present at the SID @siderm.bsky.social & PC Project mtg on their use of 3D models of #rare #genetic #skin #blistering disorders ( #HaileyHailey & #EpidermolysisBullosa) to find new therapies🤩🔬👩🔬🧫
✈️ Thrilled to share that two @simpsonlabuw.bsky.social PhD students have received travel awards to share their research in #skinbiology!
Jessica Ayers won $1000 from UC Irvine Skin Biology Resource Center, tinyurl.com/4xm98ysz
Karina Schmidt won $1400 from Uplifting Athletes, tinyurl.com/534xb3jj
Jessica Ayers won $1000 from UC Irvine Skin Biology Resource Center, tinyurl.com/4xm98ysz
Karina Schmidt won $1400 from Uplifting Athletes, tinyurl.com/534xb3jj
April 16, 2025 at 11:18 PM
Proud of Jess & Karina who won travel awards from Uplifting Athletes & UC Irvine Skin Bio Resource Ctr to present at the SID @siderm.bsky.social & PC Project mtg on their use of 3D models of #rare #genetic #skin #blistering disorders ( #HaileyHailey & #EpidermolysisBullosa) to find new therapies🤩🔬👩🔬🧫
Every day, people with #EB face challenges most of us can’t imagine. We asked Fiona what living with EB is like and what Debra means to her.
With the kindness of Debra supporters like you by our side, we can keep making a difference for Fiona and others like her. 🦋
#epidermolysisbullosa
With the kindness of Debra supporters like you by our side, we can keep making a difference for Fiona and others like her. 🦋
#epidermolysisbullosa
January 6, 2025 at 9:32 AM
Every day, people with #EB face challenges most of us can’t imagine. We asked Fiona what living with EB is like and what Debra means to her.
With the kindness of Debra supporters like you by our side, we can keep making a difference for Fiona and others like her. 🦋
#epidermolysisbullosa
With the kindness of Debra supporters like you by our side, we can keep making a difference for Fiona and others like her. 🦋
#epidermolysisbullosa
EB #epidermolysisbullosa is a rare, incurable genetic condition that makes the skin as fragile as a butterfly wing, causing it to blister and tear from minor friction.🦋
That's why Debra exists. To be a positive force for all those impacted by EB.💪
Read more here 👉 debra.ie/what-is-eb/
That's why Debra exists. To be a positive force for all those impacted by EB.💪
Read more here 👉 debra.ie/what-is-eb/
December 10, 2024 at 12:29 PM
EB #epidermolysisbullosa is a rare, incurable genetic condition that makes the skin as fragile as a butterfly wing, causing it to blister and tear from minor friction.🦋
That's why Debra exists. To be a positive force for all those impacted by EB.💪
Read more here 👉 debra.ie/what-is-eb/
That's why Debra exists. To be a positive force for all those impacted by EB.💪
Read more here 👉 debra.ie/what-is-eb/
Day 3 of #SIDSanDiego2025 included an amazing talk by PhD student Karina from @uwdermatology.bsky.social featuring our new model of #EpidermolysisBullosa Simplex. More catching up w/wonderful friends & I was truly honored to be voted onto the @siderm.bsky.social Board of Directors for a 5-year term.
May 11, 2025 at 3:19 PM
Day 3 of #SIDSanDiego2025 included an amazing talk by PhD student Karina from @uwdermatology.bsky.social featuring our new model of #EpidermolysisBullosa Simplex. More catching up w/wonderful friends & I was truly honored to be voted onto the @siderm.bsky.social Board of Directors for a 5-year term.
A new case study highlights a rare form of EpidermolysisBullosa simplex (EBS). Unlike typical EBS, affected newborns may present with distinctive scarring and skin absence, making diagnosis challenging. Read why early diagnosis is so important. #RareDisease
Early Identification of Rare Form of Epidermolysis Bullosa Simplex
How early intervention can improve heart outcomes
www.childrenscolorado.org
September 12, 2026 at 12:04 PM
A new case study highlights a rare form of EpidermolysisBullosa simplex (EBS). Unlike typical EBS, affected newborns may present with distinctive scarring and skin absence, making diagnosis challenging. Read why early diagnosis is so important. #RareDisease
📣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
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
📣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
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
From the May 2025 issue: All things #epidermolysisbullosa in this review article--the role of #fibroblasts and an overview of treatment approaches ow.ly/YSYs50V1h9N #medderm #dermsky
May 29, 2025 at 5:40 PM
From the May 2025 issue: All things #epidermolysisbullosa in this review article--the role of #fibroblasts and an overview of treatment approaches ow.ly/YSYs50V1h9N #medderm #dermsky
My lab @uwdermatology.bsky.social aims to find new therapies for #EpidermolysisBullosa Simplex (EBS) a #genetic #skin #disease causing life-threatening #blistering starting at birth. Every patient deserves a chance for a cure no matter how rare their disease: www.dermatologytimes.com/view/human-s...
Human Skin Models Advance EBS Research
Traditional mouse models for EBS are limited, prompting Simpson's lab to create more accurate human-based tissue models.
www.dermatologytimes.com
August 4, 2025 at 6:32 AM
My lab @uwdermatology.bsky.social aims to find new therapies for #EpidermolysisBullosa Simplex (EBS) a #genetic #skin #disease causing life-threatening #blistering starting at birth. Every patient deserves a chance for a cure no matter how rare their disease: www.dermatologytimes.com/view/human-s...
#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
rareLife bridges science & patient stories to drive better outcomes.
contactus@rarelifesolutions.com
#EBWeek #WeFightEB
October 25, 2025 at 2:02 PM
#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
rareLife bridges science & patient stories to drive better outcomes.
contactus@rarelifesolutions.com
#EBWeek #WeFightEB
A "second hit" impacts disease severity in a dominantly inherited genetic skin disorder. Pierre Coulombe discusses new work by Bergson, Sarig et al. from the Sprecher lab (https://buff.ly/4gPt5ZA) in Insights: https://buff.ly/41aGfuk
#EpidermolysisBullosa
#EpidermolysisBullosa
February 27, 2025 at 2:39 PM
A "second hit" impacts disease severity in a dominantly inherited genetic skin disorder. Pierre Coulombe discusses new work by Bergson, Sarig et al. from the Sprecher lab (https://buff.ly/4gPt5ZA) in Insights: https://buff.ly/41aGfuk
#EpidermolysisBullosa
#EpidermolysisBullosa