Advocacy partner: EB Research Partnership
About EB Research Partnership
The mission of EB Research Partnership is to advance life-saving treatments, and ultimately, find a cure for epidermolysis bullosa (EB) by the end of this decade. Secondarily, EBRP’s innovative model is leading the way for all rare diseases. While EB is a rare disease, there are 7,000 rare diseases that affect 1 in 10 people in the world, 95% which have no treatments, that can benefit from the research we fund and our innovative Venture Philanthropy model – both of which are scalable to all rare diseases.
Contact: Allison Bolshagettigan – Director of Programs
Phone: 646-844-0902
Email: [email protected]
Resources
Check out this inspiring film on Netflix!
Matter of Time is a compelling documentary chronicling the fight to cure EB. Fueled by the raw energy of Eddie Vedder’s 2023 solo performances in Seattle and driven by the determination of patients, families, and scientists, the film captures a growing global movement to cure EB and transform how rare diseases are treated. Matter of Time is more than a concert film. It’s a story of defiance, innovation, and progress, showing what’s possible when urgency, community, and hope collide. Learn more at https://www.matteroftimefilm.com/.
The Story of EBRP
Founded in 2010 by Jill Vedder, Eddie Vedder of Pearl Jam, and a group of dedicated parents, EB Research Partnership (EBRP) is the largest global nonprofit funding research aimed at treating and ultimately curing Epidermolysis Bullosa (EB). EB is a group of devastating and life-threatening genetic skin disorders that affect children from birth.
Thanks to the long-standing support of brave EB warriors, resilient EB families, brilliant medical experts, and generous donors, EBRP has been able to raise $50M for critical, life-saving research, fund 120+ innovative EB projects, including the first-ever FDA approved treatment for EB.
While our goal is to cure EB, the research we support and our innovative model have the potential to help advance therapies for the 7,000 rare diseases that impact 10% of the global population.
Monthly Town Hall & Recaps
Our monthly Town Hall series aims to give the EB community a space to connect not just with each other, but with our team and with leading scientists and researchers in the space to learn more about the work EBRP is funding, understand how they can get involved, and directly ask any questions they might have. Explore our Town Hall page to read recaps and watch recordings of previous discussions.
Upcoming events
About Advocacy Partners
The information above is provided by our partner. Learn more about our advocacy partners here.