Gathered here is a collection of resources specific to the state of Michigan that aim to support and inform people who are affected by or care for others affected by rare diseases.
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Rare Action Network—Michigan
- This organization—located in Lansing, Michigan—provides a place to start advocating for rare disease. The website provides resources to put rare diseases on the map and highlights opportunities to raise local awareness of rare disease.
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Life as a Zebra
- This organization works to advocate, as well as raise awareness and funds, for invisible illness research and education.
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The Arc Michigan
- Arc Michigan strives to ensure that those with developmental disabilities are valued and provided with opportunities to contribute to their community.
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Michigan Public Health Institute
- This organization is dedicated to improving the lives of those with complex health system needs. They aim to provide family-centered care for all children with special needs or disabilities.
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22 Advocacy
- Founded by a family that has a son with a rare genetic disorder, this site offers resources for advocating for children in school, with a particular focus on IEPs.
Do you know of additional Michigan-specific resources that are not listed here? Let us know and we will add them to our list.