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For over a decade, Eddie and Jill Vedder have been fighting to cure Epidermolysis Bullosa (EB), a devastating genetic skin disease that affects children from birth. Now you can stand with them. |
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.
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.
Why EB Matters to the Vedders
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In 2010, EB became personal for Eddie and Jill Vedder. A childhood friend’s child was born with Epidermolysis Bullosa (EB), a rare and devastating genetic skin disease. They saw the pain. The daily bandaging. The uncertainty no family should face.
Children with EB are often called “Butterfly Children” because their skin is as fragile as butterfly wings. Simple touch can cause severe blistering and wounds. Many endure hours of wound care every single day. For the Vedders, this wasn’t a cause to watch from afar. They knew they had to act. So they didn’t just lend their names. They co-founded EB Research Partnership. |
Epidermolysis Bullosa (EB) is a rare genetic skin disorder that causes the skin to tear and blister from minor friction or trauma. It affects children from birth and can impact internal organs, mobility, and life expectancy.
There is no cure... yet. But real progress is happening.
EB is now one of the few rare diseases with multiple FDA-approved treatments. That progress was accelerated by the work of EB Research Partnership. And Eddie Vedder helped make that possible.
There is no cure... yet. But real progress is happening.
EB is now one of the few rare diseases with multiple FDA-approved treatments. That progress was accelerated by the work of EB Research Partnership. And Eddie Vedder helped make that possible.
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 +$80M for life-saving research, contributing to a 25x 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.
Over the last decade, EBRP has made remarkable strides, including raising +$80M for life-saving research, contributing to a 25x 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.
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EB IS JUST THE BEGINNING.
Our model can accelerate cures for 7,000 other rare diseases, too.
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.
