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.
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.
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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.
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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.
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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.
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