On December 8, The Cystic Fibrosis Foundation, in collaboration with the Congressional Cystic Fibrosis Caucus and its co-chairs, U.S. Reps. James McGovern (D-Mass.) and Tom Marino (R-Pa.), presented a congressional briefing on cystic fibrosis and precision medicine.
CFF-Championed Bill Eliminates Barriers to Participation in Clinical Trials for People with CF and other Rare Diseases
The House of Representatives has passed a vote on the Ensuring Access to Clinical Trials Act (EACT), which is now set to go to the President for his signature.
Bill Would Remove Barrier to Clinical Research for Rare Diseases by Ensuring that Clinical Trial Participants Don't Lose Critical Health Benefits
Cystic Fibrosis Foundation Vice President of Therapeutics Development Dr. Michael Boyle testified today at a hearing in front of the House Energy and Commerce Committee's Subcommittee on Health. He urged members to support H.R. 209, the Ensuring Access to Clinical Trials Act (EACT), which would make permanent a law enabling people to participate in clinical trials without the fear of losing critical benefits.
A group of 62 enthusiastic teen advocates gathered in Washington, D.C. on June 25 to bring awareness of cystic fibrosis to Capitol Hill. During the 7th Annual Cystic Fibrosis Foundation Teen Advocacy Day, the teens highlighted the vital role that the CF Foundation plays in finding a cure for this life-threatening genetic disease.
On July 8, the White House honored 30-year-old Emily Kramer-Golinkoff as a “Champion of Change” for her role in advocating for the integration of precision medicine into the U.S. healthcare system.
Today, the Supreme Court decided to uphold the Affordable Care Act, allowing individuals who purchase health insurance on exchanges to continue receiving premium subsidies.
The Cystic Fibrosis Foundation is proud to announce our new National Advocacy Chairs, Melissa Shiffman from New York, NY, and Rebecca Schroeder from Coeur D'Alene, ID. Peter Barry, who, along with his wife Amy, has served as the Foundation's National Advocacy Chair for the last five years, announced the news at the Foundation's annual March on the Hill advocacy event on March 19.