#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.
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#EBWeek #WeFightEB
rareLife bridges science & patient stories to drive better outcomes.
[email protected]
#EBWeek #WeFightEB
October 25, 2025 at 2:02 PM
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📢La conferencia final del proyecto europeo BUR-EB se celebró el 7/10 en Santa Cruz de TFE.
Investigadores de 7 países y @pieldemariposa.bsky.social participaron presentando los resultados sobre el impacto de la #EpidermolysisBullosa en Europa.
👉www.bur-eb.com
#BUR_EB #RareDiseases #H2020
#SESCS
Investigadores de 7 países y @pieldemariposa.bsky.social participaron presentando los resultados sobre el impacto de la #EpidermolysisBullosa en Europa.
👉www.bur-eb.com
#BUR_EB #RareDiseases #H2020
#SESCS
October 14, 2025 at 3:45 PM
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🔽
💌 Virtual Walk & Run 4KEBI
🧮 25-31 Oktober 2025
📏 4K • Charity/Virtual Run
📌 Anywhere/Hybrid
🩵
🏐 LariKu.info/KEBI25 ⏪
🔺
🔺
°°°°
#VirtualWalkRun4KEBI #SuaraKupuKupu #YayasanKEBI #LariKuinfo #CharityRun #VirtualRun #Bali #HybridEvent #KeluargaEpidermolysisBullosaIndonesia #EpidermolysisBullosa
💌 Virtual Walk & Run 4KEBI
🧮 25-31 Oktober 2025
📏 4K • Charity/Virtual Run
📌 Anywhere/Hybrid
🩵
🏐 LariKu.info/KEBI25 ⏪
🔺
🔺
°°°°
#VirtualWalkRun4KEBI #SuaraKupuKupu #YayasanKEBI #LariKuinfo #CharityRun #VirtualRun #Bali #HybridEvent #KeluargaEpidermolysisBullosaIndonesia #EpidermolysisBullosa
October 8, 2025 at 9:38 AM
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📌 Meaningful Core Outcome Set development starts when all stakeholders gather around the table.
Learn more on Sept 25th at 1-2pm CET!
To register click here 👉 www.spindermatology.org/knowledge-ce...
#COS #EpidermolysisBullosa #webinar #education #dermatology
Learn more on Sept 25th at 1-2pm CET!
To register click here 👉 www.spindermatology.org/knowledge-ce...
#COS #EpidermolysisBullosa #webinar #education #dermatology
September 24, 2025 at 4:35 PM
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1/16 🧬 GENE THERAPY TRANSFORMS "BUTTERFLY SKIN" LIVES 🧬
KaDee Troop's four children had skin that blistered at slightest touch.
Then came 2023 and first gene therapy for epidermolysis bullosa.
Now kids who lived in bandages are doing backflips.
#GeneTherapy #RareDisease
#EpidermolysisBullosa
KaDee Troop's four children had skin that blistered at slightest touch.
Then came 2023 and first gene therapy for epidermolysis bullosa.
Now kids who lived in bandages are doing backflips.
#GeneTherapy #RareDisease
#EpidermolysisBullosa
September 7, 2025 at 11:45 PM
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September 2, 2025 at 3:22 PM
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With thanks to our expert reviewers Laura de Rosa, Silvia Zacchino and Katia Russo at Università degli Studi di Modena e Reggio Emilia and the Centre for Regenerative Medicine Modena, and our partners DEBRA Austria.
#epidermolysisbullosa #stemcells #genetherapy #ATMPs #regenerativemedicine
#epidermolysisbullosa #stemcells #genetherapy #ATMPs #regenerativemedicine
August 7, 2025 at 11:48 AM
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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
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Biggest #trends of the day for 'team stax' 'de la' and 'epidermolysis bullosa'
https://www.newsmason.com/?query=%22team%20stax%22
https://www.newsmason.com/?query=%22de%20la%22
https://www.newsmason.com/?query=%22epidermolysis%20bullosa%22
#teamstax #dela #epidermolysisbullosa
https://www.newsmason.com/?query=%22team%20stax%22
https://www.newsmason.com/?query=%22de%20la%22
https://www.newsmason.com/?query=%22epidermolysis%20bullosa%22
#teamstax #dela #epidermolysisbullosa
Biggest #trends of the day for 'team stax' 'de la' and 'epidermolysis bullosa'
https://www.newsmason.com/?query=%22team%20stax%22
https://www.newsmason.com/?query=%22de%20la%22
https://www.newsmason.com/?query=%22epidermolysis%20bullosa%22
#teamstax #dela #epidermolysisbullosa
Biggest #trends of the day for 'team stax' 'de la' and 'epidermolysis bullosa'
https://www.newsmason.com/?query=%22team%20stax%22
https://www.newsmason.com/?query=%22de%20la%22
https://www.newsmason.com/?query=%22epidermolysis%20bullosa%22
#teamstax #dela #epidermolysisbullosa
www.newsmason.com
July 25, 2025 at 11:15 AM
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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
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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
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Due aziende biotech uniscono le forze per portare terapie innovative ai pazienti affetti da epidermolisi bollosa e ulcere venose croniche.
𝐓𝐮𝐭𝐭𝐞 𝐥𝐞 𝐢𝐧𝐟𝐨:
👉 www.osservatorioterapieavanzate.it/terapie-avan...
#celltherapies #Epidermolysisbullosa
𝐓𝐮𝐭𝐭𝐞 𝐥𝐞 𝐢𝐧𝐟𝐨:
👉 www.osservatorioterapieavanzate.it/terapie-avan...
#celltherapies #Epidermolysisbullosa
June 25, 2025 at 9:57 AM
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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
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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
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Spreading awareness for EB through art!
www.tiktok.com/live/event/7...
#Art #Artist #Digitalart #illustration#tiktoklive #ebawareness #epidermolysisbullosa #artstream #livestream #butterfly #butterflychildren #NimoTV #youtubechannel #wip #Liveevent
#bluskyart #bluskyartist #tumblrartist #niche
www.tiktok.com/live/event/7...
#Art #Artist #Digitalart #illustration#tiktoklive #ebawareness #epidermolysisbullosa #artstream #livestream #butterfly #butterflychildren #NimoTV #youtubechannel #wip #Liveevent
#bluskyart #bluskyartist #tumblrartist #niche
Butterfly 🦋 Series Cont. - TikTok LIVE Events
0 viewers have registered for this event | Keeping it going with the art and spreading awareness for EB. I am also working on some special gifts for our lovely medical families and friends.
www.tiktok.com
May 28, 2025 at 4:41 PM
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Bergson, Sarig, Sprecher et al. identified deleterious variants in HMCN1 co-segregating with severe #EpidermolysisBullosa simplex and found that HMCN1 directly binds keratin 14 and critically contributes to basement membrane zone integrity: rupress.org/jem/article/...
May 15, 2025 at 2:40 PM
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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
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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
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On Tik Tok Live right now, Butterfly 🦋 Room part 2! In dedication to our beautiful butterfly babies and peeps. #family #inzoi #artist #art #inzoibuild #clipstudiopaint #epidermolysisbullosa #ebawareness #butterflychildren #tiktoklive #livestream #arttok
www.tiktok.com/t/ZTjUpSdKv/
www.tiktok.com/t/ZTjUpSdKv/
Ki Empress (@kg.artist0991) is LIVE - TikTok LIVE
Butterfly Room Art | Watch Ki Empress (@kg.artist0991)'s LIVE on TikTok and interact with others in real time.
www.tiktok.com
May 9, 2025 at 1:04 AM
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What a man, well done Graeme!
#GraemeSouness #epidermolysisbullosa #EB
#LFC
GMB star fights tears live on ITV show as he gives 'devil disease' update www.express.co.uk/showbiz/tv-r...
#GraemeSouness #epidermolysisbullosa #EB
#LFC
GMB star fights tears live on ITV show as he gives 'devil disease' update www.express.co.uk/showbiz/tv-r...
GMB star fights tears live on ITV show as he gives 'devil disease' update
Graeme Souness appeared on Good Morning Britain as he became emotional while speaking about an extremely painful illness.
www.express.co.uk
May 2, 2025 at 7:37 PM
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Eddie Vedder’s Quest to Help Cure a Rare Disease Subject of New Documentary: (Image from YouTube courtesy of EBRP) Famous Pearl Jam frontman Eddie Vedder has decided to lend his star power to efforts to cure… @goodnewsnetwork.org #EddieVedder #PearlJam #RareDisease #EpidermolysisBullosa #Documentary
Eddie Vedder’s Quest to Help Cure a Rare Disease Subject of New Documentary
(Image from YouTube courtesy of EBRP) Famous Pearl Jam frontman Eddie Vedder has decided to lend his star power to efforts to cure a rare skin disease. Inspired to take action after a family friend’s child was born with the malady, Vedder’s work leveraging the fame and draw of his shows for curing epidermolysis bullosa […]
The post Eddie Vedder’s Quest to Help Cure a Rare Disease Subject of New Documentary appeared first on Good News Network.
dlvr.it
April 23, 2025 at 3:42 AM
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Happy Easter! Hope everyone has had a good holiday of you observed it. I am cleaning off my desk and organizing. But please read my message. #andreabocelli #Epidermolysisbullosa #sims4 #inzoi #charity #raisingfunds #raisingawareness #calltoaction #children #streamer
www.tiktok.com/t/ZTj21L5pQ/
www.tiktok.com/t/ZTj21L5pQ/
TikTok - Make Your Day
www.tiktok.com
April 21, 2025 at 12:44 AM
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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
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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
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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
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9 likes