We can help you find a Rare Disease Center of Excellence for expert clinical care.Find out more
We provide disease-specific information and resources to help you no matter where you are in your journey.Explore Now
Our call center and dedicated information services team fields more than 140,000 calls and emails each year, helping to direct families to the resources and information they need.
We help with diagnostic testing assistance and travel assistance for clinical trials or consultation with disease specialists.
We provide financial assistance to caregivers for much needed respite so they can attend a conference or simply take an evening away.
We will help you find an existing patient advocacy group for your specific rare disease. We also help individuals with rare diseases and their families create their own advocacy groups if none exist.
Centers of Excellence give those living with a rare disease the best standards Patients are able to access multiple designated centers nationwide, with each center offering access to the best possible coordinated multi-specialty clinical care and diagnostic opportunities for rare diseases.
We host events where individuals living with rare diseases and their families can learn, connect, and support others such as the Living Rare, Living Stronger Patient & Family Forum and Running for Rare, a charity and awareness event.