On March 8, more than 40 Cystic Fibrosis Foundation volunteers from across the nation came together on Capitol Hill to speak out on behalf of their friends and family members with cystic fibrosis.
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The U.S. House of Representatives and the Senate have both incorporated the Expanding and Promoting Expertise in Review of Rare Treatments Act (EXPERRT Act), championed by the CF Foundation, as part of a legislative package to reauthorize the U.S. Food and Drug Administration's (FDA) system for evaluating new prescription drugs and devices.
206 care center directors sign a letter citing clinical consequences if decision moves forward.
Bill will jump-start rebuilding of the antibiotics pipeline that is vital to stave off a looming pandemic.
The law signals major improvements in health care affordability for people with CF.
Orkambi® is now approved for use in children with cystic fibrosis ages 1-2 years who have two F508del mutations. This is the only modulator available to very young children with these mutations.
Vertex’s copay assistance changes add an undue burden for people living with an already expensive, challenging lifelong disease.
On behalf of the CF community, the Cystic Fibrosis Foundation has expressed its concern to the Social Security Administration (SSA) about a proposed rule that could make it more difficult for people with CF to receive disability benefits.
In an effort led by Congressional Cystic Fibrosis Caucus co-chairs Representatives Edward Markey (D-MA) and Tom Marino (R-PA) and Senator Michael Bennet (D-CO), 37 key members of Congress sent letters to the Social Security Administration (SSA) expressing their concern about a proposed rule that could make it more difficult for people with CF to receive disability benefits.