In a strong show of support for the CF community, the U.S. Senate Appropriations Committee recently expressed the importance of innovative cystic fibrosis research in a spending bill, which is part of the federal budget under consideration right now in Congress.
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In 2011, Cystic Fibrosis Foundation advocates worked to advance cystic fibrosis research and help ensure access to treatment and care for people with the disease.
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.
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.
Legislation Includes Measures to Increase Patient and Expert Participation in FDA Review of Rare Disease Drugs
206 care center directors sign a letter citing clinical consequences if decision moves forward.
One of the reasons I decided to attend boarding school was to take charge of my cystic fibrosis care. Although I’m not perfect at taking care of myself, I learned that the importance of staying on top of treatments when my parents gave me the chance to fail.
Las personas con fibrosis quística y sus familias se han enfrentado a importantes cargas económicas debido a los programas acumuladores de copago. Familiarícese con estos programas y lo que implican para usted y sus seres queridos.