With help from one of the best-known names in music, a new venture is bringing together local researchers to bring hope to those with rare diseases.
The Richard King Mellon Foundation is committing up to $25 million to create Rare Ventures, bringing together technology, and researchers to try and find treatments and cures for rare diseases at scale.
The team is made of the EB Research Partnership, founded by Eddie and Jill Vedder plus researchers from UPMC, Pitt, CMU as well as those at Stanford Medicine.
The strategy, which incorporates AI and Pittsburgh's biomanufacturing capabilities, is to bring a venture capital mindset to philanthropy, using reinvested returns from successful treatments for one disease to work on another.
In a written statement, the Vedders say:
“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,” said Jill and Eddie Vedder, Co-Founders of the EB Research Partnership, Rock and Roll Hall of Fame inductee, and global advocates for rare disease patients. “Rare Ventures represents the next chapter of that journey. It’s about taking 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 deserves the opportunity to reach the people who need it most. When we think of Pittsburgh, we think of the City of Champions. Thanks to the Richard King Mellon Foundation, the team we have united are truly the champions of the rare disease community”
Epidermolysis Bullosa or EB is a rare disorder that affects the skin.
According to the EB Research Partnership’s website, “individuals with EB lack critical proteins that bind the skin's two layers together. Without these proteins, the skin tears apart, blisters, and shears off, leading to severe pain, disfigurement, and internal and external wounds that may never heal.”
