Alex McCurthy
(by – Hollywood Reporter) EBRP is the world’s largest organization supporting EB research, having raised $ 40 million to fund 94 projects, per organization. Last year’s Venture Into Cures virtual event drew over 500,000 viewers and raised over $ 2 million to fund research.
“Now is a critical time when life-saving EB therapies become not an ‘if’ but a ‘when’, said Michael Hund, CEO of EBRP. “With the current momentum, adequate financial resources and our innovative model of risk-taking philanthropy, we are accelerating the provision of treatment and cure to people living with EB. In the process, we are pioneering a model to accelerate treatments and cures for the 7,000 rare diseases that affect 10% of the world’s population. “
