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Frequently Asked Questions

  • A rare disease is a disorder or condition that affects fewer than 200,000 people in the United States. The National Institutes of Health lists at least 6000 rare diseases. As many as 1 in 10 Americans has a rare disease.

    See: NORD’s Rare Disease Fact Sheet.

  • The National Organization for Rare Disorders (NORD) maintains a searchable database of more 1200 rare disorders. The database includes easy-to-understand reports as well as information on assistance programs and patient organizations specific to the listed diseases.

    List of Rare Diseases | A-Z Database | NORD

    Diseases - Genetic and Rare Diseases Information Center (nih.gov)

  • NORD maintains Patient Assistance Programs that help patients and their families get medication and other assistance to cover insurance premiums and co-pays, diagnostic testing, and travel for clinical trials or medical consultations.

    Financial Assistance For Patients With Rare Diseases | NORD 

  • The MI Rare Disease Advisory Council (MI-RDAC) is being convened to serve as an advisory body that provides Michigan’s rare disease community with a stronger voice in state government. The MI-RDAC will join more than 25 such councils nationwide. The council will include representatives with a diverse array of experiences and expertise, who will work toward evidence-based solutions to challenges in the rare disease community.