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.
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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.
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.
After more than six years of dedicated service as co-chair of the Congressional Cystic Fibrosis Caucus, Rep. Edward Markey (D-MA) has stepped down from the post as he assumes new responsibilities in the U.S. Senate. Rep. Jim McGovern (D-MA) will replace Markey, joining Rep. Tom Marino (R-PA) as co-chair of the Caucus.
The Cystic Fibrosis Foundation has followed the health care reform discussion closely. While the Foundation has not taken a position on any particular health reform bill, we have consistently and aggressively encouraged officials to include specific reforms that are important for the treatment of cystic fibrosis.
Piper Beatty, a two-time double-lung transplant recipient, testifies at an FDA meeting on organ transplantation.