About
No disease is too rare to matter.
Rare Ventures is the first platform of its kind, connecting the science, capital, and infrastructure it takes to move rare disease treatments to patients, at the speed they deserve.
A non-profit built for the Bold Pursuit of Cures.
400 million people live with a rare disease. 95% have no approved treatment.
Not because the science isn't there.
Because the system was never built to move it fast enough.
Rare Ventures connects patients, data, artificial intelligence, capital, clinical development, and manufacturing into a single platform, one engine, instead of a scattered set of institutions each solving the piece they know best.
WHY
This is not a science problem. It's a systems problem.
There are brilliant scientists. Incredible clinicians. Committed patients. Companies with the resources to develop real therapies. They have simply never been connected in a way that moves discoveries to patients at the speed they deserve.
Rare Ventures exists to redesign that system.
HOW
Backed by an investment of up to $25 million from the Richard King Mellon Foundation, Rare Ventures is built on a venture-philanthropy model already proven to work. At EB Research Partnership, this same approach helped grow one disease's clinical trial landscape from two active trials to more than fifty, and helped deliver three FDA-approved therapies where none had existed before.
Data without capital doesn't change lives. Capital without data doesn't make good decisions. Rare Ventures is built on both.
We aim to do for rare disease medicine what venture capital did for technology: build the infrastructure that lets promising science become treatments, at a pace and scale the traditional system was never built for.
WHO
Founded by the team behind leading patient foundation EB Research Partnership (EBRP) and the Richard King Mellon Foundation, built in collaboration with University of Pittsburgh Medical Center Children’s Hospital of Pittsburgh, University of Pittsburgh Medical Center Vision Institute, Carnegie Mellon University, Stanford University Medicine, ElevateBio, and leading biotechnology partners.
NOTE FROM OUR FOUNDERS
Rare disease patients have waited long enough. For too long, families have faced a system where scientific discoveries move too slowly, clinical trials are difficult to access, and promising therapies often stall before reaching patients. Rare Ventures was created to challenge that reality.
Ultimately, our success will not be measured by the model we build, the capital we deploy, or the partnerships we unite. It will be measured by the therapies we help bring to patients and the lives we improve. — Michael Hund, MBA
Chief Executive Officer, EB Research Partnership
Co‑Founder, Rare Ventures
Throughout our work with the EB community, we've witnessed what becomes possible when patients, researchers, physicians, philanthropists, and industry leaders unite around a common purpose. It's about taking the lessons learned from one disease and building something that can help families facing thousands of rare diseases. Every patient deserves hope, and every scientific breakthrough should have the opportunity to reach the people who need it most. — Jill and Eddie Vedder
Co‑Founders, EB Research Partnership
Co‑Founders, Rare Ventures