by Guest Author | Mar 4, 2025 | Media/Press, News
Anyone living with a rare disease wants access to care — not just substandard healthcare, but healthcare that will keep them alive and healthy. Sadly, this is often not the case for so many patients. I am Laura Bonnell, the mother of two daughters with cystic...
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)...
