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Frequently Asked Questions
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What is a rare disease?
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.
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How can I find more information about my specific rare disease?
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)
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Where can I get help to pay medical bills related to my rare disease?
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.
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What does the Michigan Rare Disease Advisory Council do?
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.