The Rozenblum Family is generously offering to match the next $15,000 raised to support the FD/MAS Patient Registry and our fight against this horrible disease.
Why the Registry? One of the Foundation’s missions is to encourage research and find treatments and a cure for FD/MAS. The Patient Registry is one of the most important contributions toward that goal. In fact, our contacts in pharmaceuticals have named a robust Patient Registry as one of the most important factors for developing clinical trials for therapeutics.
The Registry can serve as the go-to resource for designing studies, recruiting participants and discovering similarities among FD/MAS patients. Our Registry has over 1,000 participants and 200,000 data points, and researchers are interested. A strong patient registry is a keystone in our path towards better answers and better outcomes, but it takes our continued support to maintain that path and that resource.