Nonprofit: EB Research Partnership
EB Research Partnership (EBRP) is the largest nonprofit dedicated to funding research aimed at treating and ultimately curing Epidermolysis Bullosa (EB), a group of devastating and life-threatening genetic skin disorders that affect children from birth. Its board members include co-founder Eddie Vedder (of Pearl Jam) and executives from the private equity, legal, and medical communities.
EBRP utilizes an innovative venture philanthropy model. When EBRP makes a grant to a research project, it retains the added upside of generating a recurring donation stream if the therapy or product is commercially successful, and then use this revenue to fund additional EB research. Current partnerships include Stanford University and the University of Minnesota.
Project: Strategic Planning and Venture Philanthropy
EB Research Partnership has launched a 3-year $25 million capital campaign and has completed a strategic
plan and campaign road map to achieve this goal. They would like to work with HBSCNY Community Partners to
review the plan and conduct a deeper dive into the components of the plan to achieve maximum impact. These
components include: optimizing operations and staffing, targeting new foundations and major donors, growing
high margin/ high impact events, enhancing marketing and messaging, building out their research and medical
portfolio and partnerships, and expanding upon their innovative and leading model of venture philanthropy.
The project will largely focus on the following areas.
(1) studying the organization’s innovative venture philanthropy model and creating materials explaining the
model, and its results to date, to share with potential partners and donors
(2) identifying potential research/venture philanthropy partners
(3) recommending additional ways to leverage EB Research Partnership’s board