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 | Mar 4, 2025 | News, Uncategorized
Hundreds of advocates (caregivers and patients) gathered in Washington, D.C. to make their voices heard regarding Federal legislation. Our message: support bills that impact the rare disease community. Laura is pictured here with Siri Vaeth who is the Executive...
by Guest Author | Mar 4, 2025 | News, Speaking, Uncategorized
February was a busy month for the rare disease community (a disease/disorder community is considered rare if there are fewer than 200,000 people). Bonnell Foundation CEO, Laura Bonnell was the keynote speaker at the 2025 Rare Disease Day Gathering: bridging the gaps. ...
by Guest Author | Feb 27, 2025 | News
LANSING, Mich., Feb. 27, 2025 — State Rep. Jason Morgan (D-Ann Arbor) will reintroduce legislation to create the Michigan Rare Disease Advisory Council (RDAC) in honor of Rare Disease Day tomorrow. The purpose of the council is to create a publicly available list of...
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
