Our goal is to revolutionize rare disease care thereby improving the lives of children and families affected by rare and undiagnosed diseases through social support, advocacy and treatment-focused research. We are a dedicated team of physicians, researchers and parents who know firsthand the difficulties of raising a child with a rare disease.
About Our Charity
We are a collaboration between parents, caregivers, clinicians, and research scientists. We want to revolutionize rare disease care to meet the needs of patients and their families. Our focus is the introduction of a new model of care that fosters innovative research where almost none currently exists.
Health care agencies don't fund research and research agencies don't fund health care. This creates a problem when it comes to securing funding for work that can provide immediate benefits in treatment options. The Rare Disease Foundation fills the gap by providing funding to inspired clinicians and scientists for their patient-focused projects. Our goal is to support research that can directly impact the care and quality of life of a child with a rare disease. Grant requests are simplified to reduce red tape, vetted by both scientific and parent advisory panels, and funding decisions are made within 30 days of grant application to rapidly advance care solutions.