Links to Foundations for Rare Diseases
🌟 Foundations for Rare Diseases – Supporting Patients & Driving Research Several nonprofit organizations are dedicated to improving the lives of those affected by rare diseases. The EveryLife Foundation empowers patients to advocate for science-driven policy and equitable access to treatments. The Foundation for Rare Disease Research (FFRDR) focuses on clinical diagnosis and advancing promising medical research. The Rare Disease Foundation funds innovative therapies and supports families through advocacy and microgrants. These groups work globally to raise awareness, fund research, and connect patients with vital resources.
Michael J. Fox Foundation
The Michael J. Fox Foundation for Parkinson's Research | Parkinson's Disease
🧠The Michael J. Fox Foundation for Parkinson’s Research is a nonprofit organization founded in 2000 by actor and activist Michael J. Fox. Its mission is to find a cure for Parkinson’s disease and improve therapies for those living with it today. The foundation is the largest private funder of Parkinson’s research in the world, having invested over $2 billion into scientific studies, clinical trials, and biomarker development2.
What makes it unique is its patient-focused approach, its commitment to high-impact, high-risk research, and its hands-on involvement in funding decisions. The foundation also runs initiatives like the Parkinson’s Progression Markers Initiative (PPMI) and the Fox Trial Finder, helping connect patients with cutting-edge research opportunities.