by Guest Author | Mar 4, 2025 | Media/Press, News, Uncategorized
Representative Jason Morgan reintroduced the Rare Disease Advisory Council (RDAC). See the press release: Morgan Reintroducing Bill Creating Rare Disease Advisory Council –...
by Guest Author | Feb 13, 2025 | Media/Press
Laura Bonnell, CEO of The Bonnell Foundation: Living with Cystic Fibrosis, talks with Marie Osborne on WJR radio to discuss how a 15 percent cap on NIH grants will catastrophically impact research and end hope for cures. read more
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...
