EB Research Partnership

Rare doesn’t mean few. It means millions of lives and a race against time. What starts with one rare disease becomes a story shaped by music, community, and hope. A story of people refusing to wait, moving what once felt impossible closer to reality... a cure, starting with Epidermolysis Bullosa, the Butterfly Disease, where skin can be as fragile as a butterfly’s wings. Watch Matter of Time, now streaming on Netflix. Link in bio.

For those with severe Epidermolysis Bullosa (EB), time is the most valuable asset, yet every day brings pain and dangerous complications. They can’t wait decades for a cure. Our Venture Philanthropy model turns your donation into an engine for cures: → Invest in breakthrough research. → Share in the success. → Reinvest every return, multiplying your impact again and again until EB is cured. Since our inception, we have seen an increase in clinical trials by more than 25x, and the science we fund could help cure 10,000+ rare diseases, impacting 400M people worldwide. Time is precious. Let’s give it back. Join us as we venture into cures. Give through one-time or monthly gifts, stocks, crypto, or your DAF → Link in bio #VenturePhilanthropy #EBResearch #RareDiseaseResearch

Epidermolysis Bullosa (EB) is a group of rare, life-threatening genetic disorders where the proteins that hold skin layers together are lacking. Without that link, routine touches, like getting dressed, holding a hand; can cause blisters, open wounds, and chronic pain. EB Research Partnership funds science to change that. Our goal: cure EB and turn those discoveries into help for countless other rare diseases. EB still waits for its cure, but only for now. 🧬 Join the fight and donate through the link in our bio #EBResearch #epidermolysisbullosa #lifewithEB #HealEB

We did it. 💙 Thanks to this incredible community, the 2026 Plunge for Elodie raised $603,246, surpassing this year’s goal and bringing the movement’s total impact to more than $3.5 million raised for EB research since 2018. To everyone who plunged, donated, fundraised, sponsored, shared, volunteered, or cheered us on — thank you. This milestone belongs to all of you. A special thank you to Dr. Jeff Heddles, whose generous matching gift helped double the impact of donations and bring us even closer to a world without EB. And we’re not done yet…there’s still time to donate! We have one final Plunge happening in Pittsburgh on 5/30! 💙 #plungeforelodie

Meet Robbie, an aspiring sportscaster living with Epidermolysis Bullosa, the rare skin disease known as the butterfly disease. And off the field of the #VedderCup , something bigger is happening. For Robbie and the 500,000 people worldwide living with EB, the Vedder Cup isn't just a rivalry. It's hope. Every dollar raised goes directly to EB research, funding treatments and one day, a cure for those like Robbie. And there's a way for YOU to be part of it. Visit the links in our bio to see how you could win something truly one of a kind, a custom Vedder Cup jersey personalized with your name on the back. Only 10 exist in the world. Raffle closes May 17 at 11:59PM. Winners announced May 18. 🦋 ICYMI: The Vedder Cup is the Seattle @Mariners vs San Diego @Padres rivalry named after @EddieVedder of @PearlJam who founded EB Research Partnership alongside Jill Vedder to help fund a cure for EB. This year, the second half of the series is live at T-Mobile Park in Seattle, and the Padres are leading 3-0.

Numbers tell stories. A donation logged. A match tracked. A family's name in a database, representing a life behind it. As EBRP's Development Associate, Margot Sosa is one of the people watching this movement grow in real time, every gift that comes in, every milestone reached, every person who raises their hand and says ‘I believe in this too.’ Dr. Jeff Heddles' $1 million match is the embodiment of that commitment. ”His dedication to the EB community goes far beyond generosity, it’s rooted in a true belief in what’s possible… It not only motivates our work every day, but also reinforces that we are not alone in this fight, that there are champions standing beside us, helping to drive progress forward.” That belief, Margot says, ripples outward. "A match like this has the power to unite people in a unique and powerful way. It brings individuals together around a shared goal and amplifies the impact of every contribution… it creates momentum and sparks urgency, inspires generosity, and accelerates progress in ways that might not be possible otherwise." Every dollar you give gets doubled. Every contribution becomes part of a story that's moving faster than ever toward a cure. 🦋 Support the match. 100% of your donations go straight to EB Research.

Some incredible moments from Greenwich 💙 Thank you for showing up, plunging, fundraising, and making waves for the EB community in such a big way. Together, Greenwich raised an amazing $156,762 for EB research, and 100% of every dollar brings us closer to a cure. #PlungeForElodie

Did you know a baseball rivalry is helping spread awareness for a rare disease? 🦋⚾ Two cities. One trophy. And a mission bigger than baseball. This Friday, May 15, the @Mariners host the second half of the #VedderCup at T-Mobile Park, as Seattle faces the @Padres on home turf. Every game helps raise awareness for Epidermolysis Bullosa, the “butterfly disease,” while spotlighting the mission of EB Research Partnership, founded by Jill and Eddie Vedder. Visit the link in our bio to see how you could win something truly one of a kind, a custom Vedder Cup jersey with your name on the back. 100% of every dollar donated funds EB research.

Our May Town Hall is a week away! Register today to join us. Join @chiesiglobalrarediseases for a webinar conversation with two FILSUVEZ® Friends Ambassador Mentors, whose children are living with epidermolysis bullosa (EB) and treating with FILSUVEZ® (birch triterpenes) topical gel. Through deeply personal stories, they will share the emotional realities of caregiving, the resilience that shapes their journeys, and practical insights for navigating daily life. This discussion offers support, connection, and a reminder that no family faces EB alone. WHEN: Tuesday, May 19 at 5pm ET WHAT: A live Town Hall WHERE: Virtually hosted by EBRP in partnership with Chiesi on Zoom. WHY: To provide support and educational resources to our community and to answer any pertinent questions 🦋 RSVP: Link in bio

Last week, EBRP CEO, Michael Hund was invited to speak at the @milkeninstitute Global Conference, one of the most influential cross-sector convenings in the world, where capital, policy, science, and culture meet. Innovative global leaders across finance, health, philanthropy, government, and entertainment gather to drive global impact and action. EBRP was proud to join other innovators like Dr. @drbiden , @pitbull , @evalongoria , @tiffanyhaddish , @tombrady , @lionelrichie , @shaq , FDA Commissioner @drmakaryfda , and other world-changing global leaders. Michael was invited to join “Rewriting the Rules: Scaling Innovation for Rare Diseases,” a panel that brought together some of the most influential voices in rare disease today, or as Michael said, “The Rare Disease Avengers”. Moderated by Becky Quick of @cnbc and @cnbccures , who shared her own journey as the mother of a child with SYNGAP disorder, the panel featured @dfajgenbaum of @everycure , @nicola_blackwood of @genomicsengland , Neil Kumar of @bridgebiopharma , and Will Lewis of Insmed. Michael shared our Venture into Cure’s model, combining data platform innovation and investments in AI, collaborative research/ medical/ industry networks, and venture philanthropy deal structures that return capital to fuel the next breakthrough. An unprecedented model that has now helped accelerate three FDA approvals in two years. That model was built for exactly the kind of cross-sector stage that Milken represents. For the millions living with rare diseases that have never had a treatment, this is not incremental progress. It is a fundamental rewriting of the rules. And it is scalable. For EBRP, being in that room is not just an honor. It is an affirmation that our approach belongs in the conversation about how the world solves rare disease. Patient-led. Capital-efficient. Scientifically rigorous. We are grateful to the Milken Institute and FasterCures for the platform, and to every patient, family, researcher, and partner whose trust makes this work possible. 🦋 The rules are being rewritten. We intend to help continue to write them. 🎥 Watch the full panel in our bio.

Today, we honor the moms of the EB community and mothers everywhere. 🦋 To the women who comfort, advocate, protect, and love with everything they have. To the moms carrying families through hard seasons while still finding ways to create joy, safety, and hope. To the mothers who show up again and again, even on the exhausting days. In the EB community, we see that strength every day. We see the moms learning complex care overnight. The moms holding their children through painful bandage changes. The moms pushing research forward because they refuse to accept “nothing can be done.” So much of the progress in EB exists because mothers kept fighting for more. Today, and every day, we celebrate you. Thank you for the love you carry and the hope you create.

One more Plunge still to go… and we’re heading to Pittsburgh! Pittsburgh, mark your calendars and come make a splash with us as we continue the fight to cure EB. Every plunge, every donation, and every ounce of awareness matters more than you know. Let’s finish Plunge season strong together.💪🏼🦋