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Wednesday, January 26, 2022

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    Michigan residents with rare diseases could get more state support

    Lansing — About a million Michiganders with rare diseases could receive better treatment if legislators establish a Rare Disease Advisory Council.

    A disease is called rare if it afflicts fewer than 200,000 people in the U.S. There are more than 7,000 such diseases, according to the National Organization for Rare Disorders.

    About 10% of Michigan’s population could have a rare disease, said Laura Bonnell, founder and president of The Bonnell Foundation: Living with Cystic Fibrosis in Royal Oak and a Michigan state ambassador of The Rare Action Network. 

    Nationally, 25 million to 30 million people have these conditions, according to the National Organization for Rare Disorders. 

    People with rare diseases and their families encounter difficulties at every stage of treatment, Bonnell said. That includes lack of newborn screenings and effective long-term treatment.

    Bonnell and others want to create a state Rare Disease Advisory Council with representation from health advocates, pharmacists, medical professionals and parents. The council would advise the Legislature and the governor, coordinate with other organizations and identify best practices for research and priorities. Such priorities include the cost-effectiveness of and access to treatments and services.

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