The event, held at the U.S. Capitol Visitor Center, aimed to educate members of Congress on the impact of the proposed rule to expand short-term insurance plans on people with serious and chronic health conditions.
Site Search
This year, Cystic Fibrosis Advocates inspired new champions in Washington, D.C. and in state capitols across the country to take action on critical CF-related issues.
Chad Riedy and Jaclyn and Drew Strube will help lead the Cystic Fibrosis Foundation's advocacy work to inspire action and help shape public policies that help people with CF access high-quality, specialized care.
On Friday, a federal judge issued a decision in Texas v. United States, finding the Affordable Care Act to be unconstitutional. This decision could ultimately leave people with pre-existing conditions, like cystic fibrosis, without patient protections while also jeopardizing access to adequate, affordable health care coverage.
The Cystic Fibrosis Foundation recently signed on to a letter with more than 70 organizations in opposition to the Right to Try Act, which passed in the House of Representatives earlier this month.
This month, 15-year-old Molly Bonnell and her sister Emily, 13, who have cystic fibrosis, discovered how easy it is to make their voices heard in Congress -- without leaving their living room.
More than 200 advocates from 32 states traveled to Washington, D.C., on June 28 for the Cystic Fibrosis Foundation's 10th annual Teen Advocacy Day, which enabled teens to meet with their elected officials on Capitol Hill to fight for access to high-quality, specialized care for their friends and loved ones living with CF.
PTC Therapeutics has discontinued development of ataluren as a potential treatment for people with cystic fibrosis caused by a nonsense mutation. The Cystic Fibrosis Foundation is supporting efforts to pursue treatments for people with CF who have a nonsense, splicing or other rare mutations.
Yesterday, the Cystic Fibrosis Foundation met with HHS Secretary Tom Price and seven other patient advocacy groups to discuss drug pricing and the needs of the CF community. President Trump has identified drug pricing as a top priority, and this meeting was the start of a listening tour by the Secretary.