7th annual symposium
WATCH HERE:
EBRP was honored to present at Stanford Medicine's Center for Definitive and Curative Medicine conference to speak about our "blueprint for curing the incurable." EBRP CEO, Michael Hund, Stanford's Dr. Tony Oro and Dr. Jean Tang, and EB Warrior, Charlotte, joined forces to share how EBRP's innovative business model, Stanford's curative therapies for EB, and the power of the patient can rapidly accelerate treatments and cures for EB and scale our model to benefit thousands of other rare diseases.
Dr. Anthony oro and dr. jean tang discuss How Critical, Genetic Research Could Change Lives Everywhere
WATCH HERE:
Dr. Anthony Oro and Dr. Jean Tang take us behind the scenes look into the work being done in gene and cell therapy to cure Epidermolysis Bullosa – EB for short. The scientists and researchers, like Anthony and Jean, working to find a cure for EB are simply extraordinary. A cure is just within reach.
We’re so thankful for Anthony and Jean for helping us raise $6M over the last 3 years of Venture into Cures to fund research and accelerate treatments and cures for Epidermolysis Bullosa (EB). Estimated to affect 500,000 around the world, EB is a group of rare, life-threatening skin diseases marked by fragile skin that easily breaks and blisters. The skin is so fragile that even gentle rubbing or accidental pressure can cause it to tear. For this reason, children with EB are sometimes called “butterfly” children, because their skin is as fragile as a butterfly’s wings.
EBRP was co-founded by a group of parents dedicated to savings their kids’ lives, along with Jill and Eddie Vedder, and is the largest global organization supporting research for EB. Since its foundation, EBRP has raised $50M, funded more than 120 projects, and increased clinical research for EB by nearly 20 times, including four Phase 3 clinical trials.
We’re so thankful for Anthony and Jean for helping us raise $6M over the last 3 years of Venture into Cures to fund research and accelerate treatments and cures for Epidermolysis Bullosa (EB). Estimated to affect 500,000 around the world, EB is a group of rare, life-threatening skin diseases marked by fragile skin that easily breaks and blisters. The skin is so fragile that even gentle rubbing or accidental pressure can cause it to tear. For this reason, children with EB are sometimes called “butterfly” children, because their skin is as fragile as a butterfly’s wings.
EBRP was co-founded by a group of parents dedicated to savings their kids’ lives, along with Jill and Eddie Vedder, and is the largest global organization supporting research for EB. Since its foundation, EBRP has raised $50M, funded more than 120 projects, and increased clinical research for EB by nearly 20 times, including four Phase 3 clinical trials.
