EB Research Partnership

Accelerating the Path to #HealEB

OUR MISSION
EB Research Partnership (EBRP) is dedicated to finding a cure for EB, and finding it quickly. Founded in 2010 by a group of dedicated parents and Jill and Eddie Vedder, of the band Pearl Jam, EBRP directs funds to competitive research projects to discover treatments and cures for EB and take those therapies from the bench to the bedside as swiftly as possible for patients and their families.

OUR MODEL
EBRP ensures sustainable funding for future EB research through our innovative venture philanthropy model. Instead of simply writing grants, EBRP funds research projects in exchange for a financial interest in the work. If those projects lead to commercially successful therapies, we use the returns from our shares to fund additional EB research. This means every donation has the potential to grow to multiples of its original value. Sharing. Collaborating. Curing. Our vision of a world without EB relies on 3 core pillars: data sharing on a comprehensive platform, collaboration among research entities, and investment in the most hopeful research projects.

OUR IMPACT
EBRP has raised more than $35M for critical EB research. We have funded 65 research projects, united a global consortium of 20 academic medical centers (EBCRC), and gathered data on 800 patients in our Clincial Characterizations and Outcomes Database (CCOD). Since our founding in 2010, the number of active clinical trials in EB has increased by 14 times.

“The foundation for a cure and a treatment for Elodie has already been built by EBRP. The progress made in the last ten years is nothing short of remarkable.” - Emily & David, Elodie’s Parents

Join our mission and learn how to submit your research application at www.ebresearch.org.
 
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