Rare Disease Advisory Council
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
Federal Policies Must Incentivize Rare Disease Drug Development, Not Hinder It
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...
Rep. Morgan Hopes Rare Disease Advisory Council Is A Lame Duck Priority
(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)...
Time to pass HB 4167: The Bonnell Foundations Laura Bonnell talks with Greg Bowman on WWJ.
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...
Future of Medicine is in the Hands of the Next Generation of Medical Students
“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...
City of Royal Oak officially proclaimed May 2024 CF Awareness Month!
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...
Michigan Proposes Advisory Council for Rare Diseases, Gaining Bipartisan Support
By WJR 760-AM Let's get the Rare Disease Advisory Council passed. Thanks to Marie Osborne at WJR radio (along with Tom Jordan) for doing the interview with our Laura Bonnell. The RDAC will help the 1 million people in Michigan with a rare disease. Governoer Whitmer...
Why It’s Important That Doctors Advocate for Their Patients With Rare Disease
By Laura Bonnell, CF Contributor In medical school, future physicians learn how the human body works, about medical procedures, hospital hierarchy, and how to work with patients. What they’re not learning about is current state and federal legislation. I believe...
Meet Laura Bonnell
By CanvasRebel Magazine Laura, thanks for taking the time to share your stories with us today Alright – so having the idea is one thing, but going from idea to execution is where countless people drop the ball. Can you talk to us about your journey from idea to...
Chronically Ill in a War Zone
by ROBIN SCHWARTZ An Israeli mother of three shares how she’s coping with cystic fibrosis amid the war. Read the article here
