Eddie Vedder turns solo vulnerability into a powerful plea in Netflix’s 'Matter of Time' Eddie Vedder uses two emotional solo concerts and a new Netflix film to push for a cure for epidermolysis bullosa

Ed, Jill Vedder with Netflix a 2 show Doc film Matter of Time to push for a cure for #Epidermolysisbullosa Vedder, Johnny Depp, Natalie Maines, and others, spent 15 years fighting to free the West Memphis Three, three teenagers wrongly imprisoned. 🙏 ✌️thx www.independent.co.uk/news/eddie-v...

In black text, on a very light red background with the letters “E B” that look like a butterfly, a poem is written. It reads “This wretched skin has control of me, my heart… my life… my soul. As my skin tears away, part of my being goes with it. I reach - grasping, clinging, holding on but my clawless hands fail me. It wins, taking me into drug induced abyss for the ride of my life” Chastity

Today, you’d be 42.

Before you died, I made you a promise that I’d never stop being an advocate and never stop bringing awareness to #EpidermolysisBullosa

Every time I see an owl, I think of you.

Miss you, my butterfly friend.

Learn more about EB here www.debra.org/about-eb

Is a cure for epidermolysis bullosa on the horizon? “I grew up just thinking blisters were a part of everyday life,” says Jessica Skeith. “My parents would always get me the expensive school shoes hoping that they wouldn’t give me blisters, but I…

Is a cure for epidermolysis bullosa finally on the horizon? #SophieWillis reports

#dermatology #epidermolysisbullosa

From the January issue: #SOX2 is a potential diagnostic biomarker and anticancer target in #cutaneoussquamouscell carcinoma in dystrophic #epidermolysisbullosa https://ow.ly/7V5e50Y0ByL #medderm #dermatology #dermsky

Libyan man in Minnesota for medical treatment for rare skin condition is detained by ICE agents Hani Duglof and his brother Mohamad Duklef left Libya more than a decade ago, unable to find relief for a rare condition that threatens to leave their skin torn and blistered at even the slightest pro...

www.cbsnews.com/minnesota/ne... #EB #EpidermolysisBullosa #ICE #cruelty

#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

Collage de imágenes de la conferencia final del proyecto europeo BUR-EB, celebrada el 7 de octubre de 2025 en Santa Cruz de Tenerife, con varios ponentes y asistentes.

Collage de momentos de la conferencia final del proyecto BUR-EB, celebrada el 7 de octubre de 2025, con investigadores presentando resultados y público asistente.

Collage con intervenciones de participantes internacionales durante la conferencia final del proyecto BUR-EB, celebrada el 7 de octubre de 2025 en Santa Cruz de Tenerife.

Foto grupal de los investigadores y representantes de entidades participantes en la conferencia final del proyecto europeo BUR-EB, celebrada el 7 de octubre de 2025 en Santa Cruz de Tenerife.

📢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

🔽
💌 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

📌 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

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

#COS #EpidermolysisBullosa #webinar #education #dermatology

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

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.

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...

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.

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!

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

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

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

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.

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

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/...

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...

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.

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.

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/

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.

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...

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.

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

TikTok - Make Your Day

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/

Good man Graeme Souness, highlighting this cruel disease and fundraising for EB. #EpidermolysisBullosa
#Liverpool #LFC

youtu.be/fvVWMX64Jy8?...

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🤩🔬👩‍🔬🧫

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

From the March 2025 issue: A good model becomes even better for #epidermolysisbullosa research www.jidinnovations.org/article/S266... #medderm