Virtual Event
Advocacy partner: EB Research Partnership
About EB Research Partnership
The mission of EB Research Partnership is to advance life-saving treatments, and ultimately, find a cure for epidermolysis bullosa (EB) by the end of this decade. Secondarily, EBRP’s innovative model is leading the way for all rare diseases. While EB is a rare disease, there are 7,000 rare diseases that affect 1 in 10 people in the world, 95% which have no treatments, that can benefit from the research we fund and our innovative Venture Philanthropy model – both of which are scalable to all rare diseases. Click here to watch The Story of the EB Research Partnership!
Contact: Allison McGettigan – Director of Programs
Phone: 646-844-0902
Email: [email protected]
Check out this inspiring film in a city near you.Â
The Matter of Time film continues its momentum after winning major festival awards, launching a special screening tour to raise EB awareness and inspire global action. The film aims to bring hope to the 500,000 people affected by EB, uniting communities worldwide. Select events will also feature panels with families, researchers, and voices from the documentary, plus merchandise and other special moments. For more information on locations, dates and how to purchase tickets please visit: https://www.
Upcoming events
About Advocacy Partners
The information above is provided by our partner. Learn more about our advocacy partners here.