Building a Faster Path to curing epidermolysis bullosa
EB Research Partnership is the largest not-for-profit funding research aimed at treating and ultimately curing Epidermolysis Bullosa.
Our Mission
To raise funds to invest in science & medical research that will lead to products and therapies for treating and ultimately curing Epidermolysis Bullosa, a group of life threatening skin disorders that affects children from birth.
“It’s about the most insane skin disorder you can imagine. And when you realize it also affects the internal organs, then you see it as diabolical.”
Our Story
Children with EB are often called “Butterfly Children” because their skin is as fragile as the wings of a butterfly. With skin this fragile, everyday activities like eating, sleeping, walking & playing can cause the skin to tear or blister.
Until recently treatments for EB focussed on managing symptoms and preventing infection.
The EB Research Partnership was formed in the United States by parents of EB families and friends Jill and Eddie Vedder (Pearl Jam). In Australia the then EB Research Foundation was founded in 2016 by EB families and friends and in 2020 the two organisations merged, recognising their joint goals.
EB Research Partnership (EBRP) is solely focussed on finding a cure for EB. EBRP’s model blends business discipline and scientific rigor. We find the most promising research projects. We vet them through our world-class scientific advisory board. Then, in exchange for funding them, we take a financial interest in the work of the university or business. When those projects succeed, we reinvest the returns from our shares back into other promising EB research projects. That means every dollar invested is multiplied — potentially many times over.
EB is just the beginning. We believe our method and model can accelerate how cures are found for 7,000 diseases impacting 350,000,000 people worldwide.