OLIVIA RODRIGO on the beauty of the eb community &
science funded by ebrp
WATCH HERE:
People with EB have skin so delicate, they call it the butterfly disease. But like the butterfly, what begins as an impossible struggle can become a remarkable metamorphosis. There's beauty in the growth of science and magic in the transformation of research. Olivia Rodrigo helps explain how beautiful the EB community is and why a cure for EB is just within reach.
We’re so thankful for Olivia Rodrigo 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 Olivia Rodrigo 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.
