by Guest Author | Dec 31, 2024 | Media/Press, News
The newly constituted Michigan Rare Disease Advisory Council (MI RDAC) met in early October 2024 and began its mandate as an advisory body that provides Michigan’s rare disease community with a stronger voice in state government. Read more
by Laura Bonnell | Dec 18, 2024 | Media/Press
For most of my daughters’ lives, I lived with the reality that any day could be their last. After they were both diagnosed with cystic fibrosis (CF), our lives centered around constant check-ups, testing, and a revolving door of pills, inhalers, and other medications...
by Guest Author | Dec 4, 2024 | Media/Press
(Source: MIRS.news, Published 11/26/2024) Rep. Jason Morgan (D-Ann Arbor) is pushing for the Rare Disease Advisory Council to be a priority in the Senate this lame-duck session. Under HB 4167, the council would advise the Department of Health and Human Services (DHHS)...
by Guest Author | Dec 2, 2024 | Media/Press, News
There are 1 million people in Michigan with a rare disease, (and their family and friends) who will be impacted by passage of the Rare Disease Advisory Council (RDAC). Members of the RDAC are meant to offer advice, direct, and develop recommendations for policy around...
by Guest Author | Jun 12, 2024 | Media/Press, News
“The future of medicine is in the hands of the next generation of medical students I have come to know. They are bright stars, and I am confident in their medical careers” says Laura Bonnell, the CEO of the BonnellFoundation: Living with cystic fibrosis. “I was...
by Laura Bonnell | Apr 9, 2024 | Media/Press
The City of Royal Oak officially proclaimed May 2024 as CF Awareness Month! Thanks to Mayor Mike Fournier and commissioners for recognizing this rare disease. Thanks also to the families that came to show their support and represent their nieces and adult children...
