100% of your donation goes directly toward research, treatments, and finding a cure.

At EBRP, we have one bold audacious goal: accelerate treatments and a cure for EB as rapidly as possible. In the process, we’re pioneering a model that can benefit the more than 400 million people affected by a rare disease. We are proud of the unprecedented progress being made towards achieving that goal, and our community is more inspired than ever to continue advancing life-saving treatments and cures for EB families across the globe.

With your generous support, 2025 marked another record breaking year for our organization and this community. EBRP funded more than $4.6 million for 29 of the most innovative and impactful EB research projects. These projects spanned 7 different countries, covered all EB subtypes, and created a diverse portfolio of options to combat EB including gene editing and gene therapies, stem cell therapies, cancer therapies, immune therapies, mRNA, antibodies, technology platforms, and drug repurposing.

Since 2010, we have raised more than $80 million, funded 189 projects, and directly transformed the EB clinical trial landscape. From 2 clinical trials to over 50 (more than half of which we have directly funded), from 0 approved treatments to 3 FDA-approved life-changing therapies. 2025 marked another watershed moment with the third FDA approval of Abeona’s Zevaskyn, another project EBRP was an early investor in and the first and only cell-based gene therapy for patients with EB. These approvals are not only a landmark victory for individuals living with EB and their families, but also a huge milestone for the rare disease community at large. Currently, 95% of rare diseases lack an FDA approved treatment, and you all are a part of the team that helped EB cross over into the 5% three times in the last two years. With your support, we are rapidly changing this statistic. Our team is laser-focused, we want to cure EB by 2030.

In 2025, we were able to connect with the EB community across the globe. We premiered our documentary film, Matter of Time, in more than 40 global theaters, telling the story of our mission to cure EB and establish an innovative model for everyone living with a rare disease, along with the healing power of music from our Co-Founder, Eddie Vedder. The film is more than a movie, it’s a movement, and while it continues to win awards, the greatest reward is what it means and represents for the courageous patients and families, the brilliant scientific community, and everyone dedicating their time and talents to join this team to together accomplish our bold mission.

We brought together leading researchers, clinicians, patient and advocate ambassadors, biotech and pharma, government and healthcare experts for 11 Town Halls. We were able to share our mission and model with keynotes across the world including with the former First Lady of the United States, Yale University, Cambridge University, American Society of Cell and Gene Therapy, the Milken Institute, and even rang the Opening Bell on the New York Stock Exchange. We took the field with Major League Baseball and the Australian Football League. We Plunged for Elodie (and John Hudson, Brooks, and Jacob, Patterson and so many others too). We were Grateful for Graham. We made good on Wesson’s Wishes. Hallie Grace gave us Hope. We Climbed Toward a Cure in Australia with Terry. We sent EB west, mile by mile, by bike with Rich. We marched with Elliana’s Army and alongside you as you ran Marathons. And we joined many other amazing families that took action and rallied their communities.

We’re creating extraordinary progress for EB and in the process, showing the world how cures are found. Our progress is teaching and pioneering a path for the hundreds of millions battling rare diseases worldwide. While this progress is extremely exciting, our work is not done.

These are major milestones building more momentum than ever before, but they are not endpoints. They are key markers along the journey, but not our final destination. Having worked in service to the patient community for 20 years, these are the wins that we relentlessly fight for every day. And tomorrow, we will get up and continue fighting until there is a treatment for every patient and we achieve our ultimate goal of a cure.

We are honored to have you on the team that WILL cure EB and lead the way for the hundreds of millions battling rare diseases worldwide. Thank you for joining us as we continue on our venture into cures, for EB and beyond.