EB Research Partnership (EBRP) was founded in 2010 by a group of parents dedicated to saving their children’s lives along with Jill and Eddie Vedder (Pearl Jam) with one bold audacious goal: treat and cure the devastating and life-threatening genetic rare skin disease epidermolysis bullosa (EB) by 2030 and in the process pioneer an innovative business and technology model to lead the way for 400 million people with a rare disease. As EB is typically caused by a single genetic mutation and treatments are observable on the surface of the skin, EB is first off the runway for impactful and curative medicine such as gene, stem cell, and immune therapies. Leading researchers believe a meaningful treatment or a cure is achievable before the end of this decade. 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 EBRP funds and its innovative venture philanthropy model - both of which are scalable to all rare diseases.
EB is a life-threatening genetic disorder that affects approximately 500,000 people worldwide. Called "Butterfly Children" because their skin is as fragile as the wings of a butterfly, children with EB face severe pain, open external and internal wounds, and a grueling daily bandaging process. There is currently no treatment or cure for EB, however EBRP's innovative model is helping to fast-track not only a cure for EB, but therapies that could affect thousands of other rare diseases.
EBRP utilizes a venture philanthropy business model which generates a return on investment from research that EBRP funds. EBRP’s pioneering model has been praised for its leadership by Harvard Business School, Yale University, MIT and the Milken Institute FasterCures.
EBRP has always operated as a lean and high efficiency organization committed to the highest financial responsibility, directing nearly 90% of revenue to research and obtaining the highest charity accreditations (Charity Navigator Four Star Charity and Guidestar Platinum Transparency). EBRP has driven unprecedented impact, transforming the EB landscape from 2 to now nearly 40 clinical trials, including for the first time ever 4 Phase III clinical trials. The possibility of healing EB within the next decade is now within our grasp.
The biggest obstacle to curing EB isn’t science — it’s funding. EB Research Partnership has a proven history and plan to scale.
EB Research Partnership have prioritized funding for projects that have a plan to be in the hands of patients in the next 1-4 years and will lead to significantly improving the quality of lives of those living with EB or are curative.
Smart Cities Council Global CEO, Corey Gray, joins EB Research Partnership on their board of directors as the values of both organizations strongly align - values of courage, innovation, collaboration, scalable models, and a commitment to bold goals that deliver big impact.
Together, we will lead to a cure for EB and pioneer the innovative model for hundreds of millions of people with a rare disease. Click here to read more about EB Research Partnership.