A huge congratulations to all of our Team EBRP runners who participated in the 2025 NYC Half Marathon this past Sunday! 💙👏🎉🏃‍♂️🏃🏽‍♀️🏃🏾‍♂️ A special thank you to everyone who came out to cheer the runners on at the 12-mile marker—it was amazing to see the energy and support along the

Some exciting news for baseball fans, music fans, and supporters of EB research! ⚾️🎸 The San Diego Padres and Seattle Mariners are set to face off for the Vedder Cup, honoring Pearl Jam frontman and EB Research Partnership co-founder, Eddie Vedder. This special six-game season series not only

Share your creative, funniest, coldest, and boldest virtual plunges and you could win EBRP merch! It's fun and easy to join no matter where you are! Get in on Plunge for Elodie 2025 anytime March through May with your own plunge page. 💧🦋 🌎 1) Set up your page at

$250,000 DONATION MATCH ANNOUNCEMENT! Drum roll please…we are thrilled to announce some exciting news on behalf of our friend and long-time EB Research Partnership supporter, Dr. Jeff Heddles. Starting today, every single dollar donated to EB research in 2025 will be matched

A friendly reminder from Margot Sosa, EBRP's Development Associate, to sign up for our March Town Hall being held today, Tuesday, March 25 at 5 PM EDT (USA)/Wednesday, March 26 at 9 AM AEDT (AUS). This month will feature a public discussion with Jordan Eaves, founder of Wesson’s

Our March Town Hall focused on Junctional Epidermolysis Bullosa (JEB), highlighting emerging therapies and innovative community initiatives. Hosted by Michael Hund, CEO of EBRP, this Town Hall brought us an insightful conversation with leading experts and advocates. 🦋✨

Thanks to the generosity of Dr. Jeff Heddles, every donation to EBRP is being matched dollar for dollar—up to $250,000! So far, we’ve raised over $141,779 toward life-saving EB research. 👏 For years, Jeff has been a passionate supporter and advocate for EB research, from

At EB Research Partnership, we're committed to accelerating treatments and finding a cure for Epidermolysis Bullosa (EB). If you or a loved one has experience with FILSUVEZ® (birch triterpenes) topical gel, your insights can help others navigate EB care. Take this quick

We have an announcement! 📢 We have earned another Platinum Seal of Transparency with Candid! 🦋 What does this rating mean? It indicates that a nonprofit organization has achieved the highest level of recognition for transparency, signifying that they share detailed

At EB Research Partnership, we’re dedicated to accelerating treatments and finding a cure for Epidermolysis Bullosa (EB)! Stories like Henry’s—about his experience with FILSUVEZ® (birch triterpenes) topical gel—are inspiring others in the EB community. Now it’s your turn! Your

We are so excited to partner with Brooke Moriber for a special night of music and impact! 🎶 On Saturday, April 26, join us at Bitter End for a benefit show featuring Brooke Moriber, Terre Roche, Cassandra Kubinski, Brennley Brown, and special guest Jim Murphy of Music Choice

With the help of a research grant from EBRP, the Koehler Lab at Boston Children's recently developed a new skin-on-chip (SoC) model using human skin organoids that has shown to mimic actual human skin better than traditional lab models. 🦋💙🧬 In the past, developing new

BIG ANNOUNCEMENT! We’ve been waiting a long time to share this… The feature documentary MATTER OF TIME will have its World Premiere at the Tribeca Film Festival on June 12th.

Don’t forget to sign up for the 4th Annual Grateful for Graham 5K Run & Walk, happening next Saturday, May 3! Join us in raising vital funds for EB research and awareness. Whether you're joining us in Utica, NY or participating virtually from anywhere in the country, you’re part

April’s virtual Town Hall event is only one week away! This month’s discussion will feature representatives from TWi Biotechnology and EB House Austria, Principal Investigators on the EBShield Study, an EB ambassador, and the EBRP Team. Join us as we discuss the Phase 2/3 Trial

It is with our deepest condolences that we share the passing of Shardai Cousino, a strong and beautiful voice of the EB community. 🦋 💙 We were honored to have her as a guest at Venture Into Cures Seattle and we will always remember her spirit and legacy. EB Research

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 EB Research Partnership find a cure for Epidermolysis Bullosa: fandiem.com/eddievedder

Exciting news! The European Commission (EC) has approved VYJUVEK®, the first-ever topical gene therapy developed to heal chronic wounds in patients with Dystrophic Epidermolysis Bullosa (DEB), for marketing authorization in all European Union member states, as well as Iceland,

A friendly reminder from Allison McGettigan, Director of Programs at EB Research Partnership, to sign up for our April Town Hall being held on, Wednesday, April 30 at 5 PM ET (USA). This month’s discussion will feature representatives from TWi Biotechnology and EB House