Eddie vedder TELLS THE STORY OF EB RESEARCH PARTNERSHIP
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Founded in 2010 by a group of dedicated parents alongside Jill and Eddie Vedder of Pearl Jam, EB Research Partnership (EBRP) is the largest 501(c)(3) nonprofit funding research aimed at finding a cure for Epidermolysis Bullosa (EB). Working around the clock with offices in the US and Australia, EBRP utilizes an innovative Venture Philanthropy business model. When making a grant to a research project, they retain the added upside of generating a recurring revenue stream if the therapy or product is commercially successful, then use the return on investment to fund additional EB research until a cure is found.
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Since inception, thanks to the remarkable leadership of the Vedders, EB Research Partnership has raised over $60 million and funded more than 140 research projects around the world, transforming the clinical trial landscape by 20X and helping fund the first ever FDA approved treatment for EB.
"I am extremely humbled and grateful to be able to stand next to these heroic patients, parents, researchers, and doctors as we work together to find a cure for EB. Sharing this mission and message with people around the world has filled me with extreme pride and hope. My wife and I have been working on this cause for over a decade and it is amazing to reflect on the progress that has been made. We can find a cure – the promise is real," says Eddie Vedder, Pearl Jam lead singer and Co-Founder of EB Research Partnership. The organization is committed to funding life-saving research focused on accelerating treatments and cures for EB – and beyond. |
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Epidermolysis Bullosa (EB) is a devastating and life-threatening genetic skin disorder that affects children from birth. Individuals with EB lack critical proteins that bind the skin's two layers together, causing the skin to tear apart, blister, and shear off, leading to severe pain, disfigurement, and internal and external wounds that may never heal. The majority battling EB are children, as many don’t live long into adulthood. 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 and playing can become monumental tasks. Today, there are no cures for individuals battling EB, however, EB Research Partnership (EBRP) is dedicated to changing that. |
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Founded in 2010 by a group of dedicated parents, Jill Vedder, and Eddie Vedder of Pearl Jam, EB Research Partnership (EBRP) is the largest nonprofit funding research aimed at finding a cure for Epidermolysis Bullosa (EB).
Over the last decade, EBRP has made remarkable strides, including raising +$60M for life-saving research, contributing to a 20x growth in EB clinical trials, helping to fund the first-ever FDA approved topical gene therapy and treatment for EB families. |
EBRP ensures sustainable funding for future EB research through an innovative Venture Philanthropy Model. Instead of simply making grants, EBRP searches the globe to strengthen and accelerate the most promising research projects. These projects are vetted through EBRP’s world-class Scientific Advisory Board.In exchange for funding, EBRP takes a financial interest in the work of research institutions. When those projects succeed, the returns are reinvested back into other promising EB research initiatives that are also scalable across thousands of other rare diseases. Every dollar invested at EBRP is multiplied — potentially many times over.
EBRP’s Venture Philanthropy Model has been highlighted for its leadership by Harvard, Yale, MIT, the Milken Institute, and Stanford Social Innovation Review.
EBRP’s Venture Philanthropy Model has been highlighted for its leadership by Harvard, Yale, MIT, the Milken Institute, and Stanford Social Innovation Review.
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At EBRP, we have one bold audacious goal: heal and cure EB by 2030. In the process, we’re pioneering a model that can benefit the more than 400 million people affected by a rare disease. We are proud of the progress being made towards achieving that goal and more inspired than ever to continue advancing life-saving treatments and cures for EB families across the globe.
