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 | Feb 24, 2025 | Podcasts
Michael Armstrong is a 25-year-old pre-law student. He loves to read, paint, play card games and video games. He was diagnosed with CF as an infant. We’re going to talk about his CF journey and how life took a turn when he was being evaluated for a lung transplant in...
