by Guest Author | May 15, 2024 | Advocating for CF
The Bonnell Foundation is working to raise awareness about the concerns over the Prescription Drug Affordability Board. This would harm research and development. As of today (May 9th, 2024) it has passed the Senate and is before the House. Without amendments made to...
by Laura Bonnell | Nov 18, 2023 | Advocating for CF, Speaking, Uncategorized
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...
by Laura Bonnell | Nov 8, 2023 | Advocating for CF, Speaking
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...
by Laura Bonnell | Oct 18, 2023 | Advocating for CF, Speaking
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...
by Laura Bonnell | Oct 13, 2023 | Advocating for CF, Speaking
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...
by Laura Bonnell | Oct 12, 2023 | Advocating for CF, Speaking
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...
