Rare Disease Resources

The National Organization for Rare Disorders - A non-profit organization that represents all individuals and families affected by rare disease.
Genetic and Rare Diseases Information Center - A resource managed by the National Institutes of Health to provide information and help to the rare disease community.
MDHHS Newborn Screening Panel - A list of more than 50 disorders included in Michigan's newborn screening panel. Fact sheets are available for some disorders.
Michigan FY25 General Omnibus: Senate Bill 747/Public Act 121 of 2024 - Establishes funding for, and role of; the Rare Disease Advisory Council. The appropriation is referenced on page 176.

Rare Disease Resources