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.
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.
Life as a Zebra
- This organization works to advocate, as well as raise awareness and funds, for invisible illness research and education.
The Arc Michigan
- Arc Michigan strives to ensure that those with developmental disabilities are valued and provided with opportunities to contribute to their community.
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.
- 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.