EB Research Partnership

EB Research Partnership aims to fund innovative research projects with the potential to find treatments and, ultimately, cures for EB. In the process, EBRP will pioneer a new model for how rare diseases can be cured.

EBRP reviews grant applications bi-annually and awards funding to competitive and innovative research projects with the potential to lead to treatments and cures for EB. The organization fosters collaboration among leading medical research and clinical centers to expedite the path for potential therapies from the laboratory to the clinic. EBRP utilizes an innovative venture philanthropy model, leveraging concepts from principal investing and applying them towards achieving philanthropic goals. When making a grant to a research project, EBRP retains the added upside of generating a recurring donation stream if the therapy or product is commercially successful, then uses this revenue to fund additional EB research.

EB Research Partnership partners with non-profit and for-profit organizations, foundations, individual donors, and the EB and research communities. All grant applications are evaluated and scored by EBRP’s Scientific Advisory Board (SAB), a group of experts in various research and medical fields, which recommends the most innovative and competitive projects for funding. Along with leading pediatric dermatologists, EBRP founded the EB Clinical Research Consortium (EBCRC), comprised of international institutions that conduct high-quality translational and clinical research and contribute data to the EB Clinical Characterization and Outcomes Database (CCOD), aiming to advance care for patients with EB. To futher this work, EBRP partnered with Amazon Web Services to create a state-of-the-art technology platform that brings together patient data for all stakeholders - researchers, patients, and industry - to more rapidly advance therapies for EB.

Since the organization's founding, EB Research Partnership has raised over $40 million for innovative EB research and funded over 100 EB research projects. The number of clinical trials in EB has grown from just 2 when EBRP was founded in 2010 to over 30 today, a 15x increase. EBRP has founded the EB Clinical Research Consortium and iPS Cell Consortium, encouraging collaborative efforts among researchers and clinicians to promote efficiency and progress in the field. Currently, the EB Clinical Characterization and Outcomes Database (CCOD) has over 800 patients enrolled, providing valuable patient data to scientists focused on improving and advancing care. EBRP's partnership with Amazon Web Services will greatly expand and improve upon this database, accelerating the lab to clinic process for potential treatments and cures. As EB encompasses a group of blistering disorders, the EB community will require several different treatment options. EBRP will continue to unite the best minds in EB research and provide funding to competitive projects with potential to lead to disease-modifying therapies and cures for EB.