February was a busy month for the rare disease community
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. ...
Laura Bonnell Speaks at The Ohio Valley CF Consortium
The Ohio Valley CF Consortium unites scientists (clinical and basic research) together from CF Clinics in Michigan, Ohio, Pennsylvania, Indiana, Kentucky and West Virginia. There is an exchange of ideas, and so much always comes from this conference. This year The...
Bonnell Foundation CEO, Laura Bonnell speaks at the Rare Action Access Project (RAAP) in Washington, D.C. on November 14th and 15th.
It was an exciting time in Washington, D.C. on November 14th and 15th. Bonnell Foundation CEO, Laura Bonnell traveled to our nation's Capital to speak at the Rare Action Access Project (RAAP). Laura talked about the importance of passing the Rare Disease Advisory...
Patient and Caregiver Perspectives from the 2023 NORD Breakthrough Summit
Patient and Caregiver Perspectives from the 2023 NORD Breakthrough SummitWe asked those impacted by rare disease to share their experiences and takeaways from the summit.By Eric Monticello It’s often said that rare diseases aren’t that rare. And the National...
October 15-17 NORD Summit
Laura attended to meet and listen to rare disease experts, but most importantly to meet other rare disease advocates. It was a wonderful way to connect.
October 12th – Celebration of Hope, Grand Rapids
Laura spoke about The Bonnell Foundation and advocacy. The Prescription Drug Advisory Board (PDAB) is a hot topic. The rare disease community does not want it passed, but it sailed quickly through the Senate. We've given amendments that include the patient voice to...
October 11th – Lansing, Michigan
Laura advocates at the Lansing Capitol. She testified before the Senate Health Policy Committee, asking Senators to pass the Rare Disease Advisory Council (RDAC). This will give all stakeholders (Insurance, Pharma, patients, parents, doctors, etc). Laura was in good...
Patients Engaging: Empowering Your Voice
Patients are essential partners in developing measurable value in healthcare. Their voices should be heard by all stakeholders in the healthcare continuum – innovators, manufacturers, providers, payers, regulators and policymakers – from scientific discovery to care...
Scholarships, Grants & Other Benefits for People with CF
Discover opportunities available to your child with CF. Our guest speakers will highlight local and national programs available for people with CF. We also invite parents of older children to join the meeting and share personal experiences.
How to Apply for a Bonnell Foundation Education Scholarship Webinar held on January 27, 2022
All your questions about how to apply for our education scholarships are answered in this webinar. Previous scholarship winners were on hand to help you navigate the process! We hope students with cystic fibrosis will apply for our college, trade school and community...
FDA Listening Session: COVID 19 Impact on Rare Disease Communities
Laura Bonnell, Founder of the Bonnell Foundation talks about the need and scarcity of PPE in the CF community. Bonnell was asked to speak in the National Organization for Rare Disease Disorders (NORD). You can see her at about 25:45 in this video.
