Today, the U.S. Senate released its version of the health care reform bill, titled the Better Care Reconciliation Act, and in response, the Cystic Fibrosis Foundation affirmed its opposition to the legislation.
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Last month, Senator Chuck Grassley (R-Iowa) and I partnered to create the Cystic Fibrosis Caucus in the U.S. Senate. We are working toward a day when CF stands for “Cured Forever.”
A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.
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.
Revised Law Includes Designated Funding for Rare Diseases
Yesterday, the U.S. Department of Health and Human Services finalized a rule expanding short-term, limited-duration insurance plans -- threatening access to adequate, affordable coverage for people with cystic fibrosis who rely on the individual marketplace.
Historic Time in Treatment of Rare Disease as Promising Drugs Reach Phase 3 Trials
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.
Legislation to Help Speed Research for Cystic Fibrosis and Other Rare Diseases