​Building a Faster Path to Curing Epidermolysis Bullosa.

EB Research Partnership (EBRP) is the largest global organization dedicated to funding research to treat and cure Epidermolysis Bullosa (EB).

EB attacks the skin — not just the skin we see, but also the skin inside of us. The resulting wounds never heal. Disfigurement, blisters, bleeding, and ever-present pain follow. 

It is lethal for many of the children born with it.

But that is changing. Through the hard work of scientists, we’re on the precipice of a cure. Not only that, but the methodology we’ve pioneered to develop a cure holds the key to helping millions suffering from rare diseases.

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“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.”

—    Eddie Vedder, EBRP Co-Founder

THE VENTURE INTO CURES METHODOLOGY

A POWERFUL BLEND OF 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.

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the venture into cures model

Share. Collaborate. Cure.

We have reached the threshold of a far more promising future for children born with EB. Leading researchers believe that both life-changing treatments and a cure are within reach. To realize our vision of a world without EB, we’re building a research model based on three core pillars.

DATA PLATFORM
The largest gathering of EB data imaginable, including clinical, genomic, and patient data underlying the disease.

RESEARCH NETWORK
An open and fluid collaboration consortium that brings together the often siloed academic, medical, and patient communities.

IMPACT PORTFOLIO
Direct investment in the most promising projects, including disease controlling, changing, and curing therapies.

“Our work in skin and stem cell biology has opened up therapeutic avenues we never thought possible.”
— Tony Oro, MD

RETURN ON IMPACT // FOR EB AND BEYOND

A cure for EB is within reach today. Cures for 10,000 rare diseases can be too.

EB is just the beginning. We believe our method and model can accelerate how cures are found for 10,000 diseases impacting 400,000,000 people worldwide.

95% of Rare Diseases Have No Approved Treatment. Our Model Changes That.

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Be part of a transformational movement.​

We’re looking for compassionate investors ready to help us change lives and the way rare diseases are cured. Join us today.