The Story of EB Research Partnership

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.

[@FlipperWolf]

I really hope they can achieve their goal, it's not fair that people have to go through this...