Hannah Simone Tells the Story of the Endlessly Brave and Positive Fazeel Irfan Living with EB
WATCH HERE:
Hannah Simone helps tell the story of Fazeel Irfan – a young man living with Recessive Dystrophic Epidermolysis Bullosa, or RDEB for short. Fazeel is funny, smart, determined, and beats the odds every chance he gets.
We’re so thankful for Hannah Simone and Fazeel 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 Hannah Simone and Fazeel 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.
