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 | Mar 19, 2024 | Speaking
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...
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...
