The Cystic Fibrosis Foundation hosted a Congressional briefing on February 11 to discuss the benefits of the Foundation's model of specialized, coordinated care and its innovative strategies for drug development, and how they can serve as an example for other rare, chronic diseases.
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More than 60 CF Foundation volunteers came together in Washington, D.C. to speak with their elected officials on behalf of friends and family members affected by the disease during March on the Hill, the Cystic Fibrosis Foundation's signature annual advocacy event.
Teen volunteers from 27 states across the country gathered in Washington, D.C., on June 26 to advocate for friends and loved ones who have cystic fibrosis during the Cystic Fibrosis Foundation's sixth annual Teen Advocacy Day.
CF Foundation President and CEO Robert J. Beall, Ph.D. testified today before the House of Representatives' Energy and Commerce Committee at a hearing entitled, “21st Century Cures: Incorporating the Patient Perspective.”
Lack of insurance coverage for cystic fibrosis-related medications remains a top concern for people with CF and their families, a recent study found.
In 2014, the Cystic Fibrosis Foundation and advocates across the country played a vital role in shaping issues important to the CF community. CF advocates attended more than 500 meetings with elected officials and sent them more than 60,000 messages advocating on behalf of people with CF.
Cystic fibrosis is caused by mutations in both copies of the cystic fibrosis transmembrane conductance regulator (CFTR) gene. Scientists are examining whether it is possible to correct the mutations through a process called gene editing.
With promising new discoveries in the pipeline and advancements we've made in the search for new treatments and a cure, we must continue our work to protect access to adequate, affordable insurance that preserves access to high-quality cystic fibrosis care; and support progress toward new therapies and a cure.