Revised Law Includes Designated Funding for Rare Diseases
Site Search
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.
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
A mother worries that her son may lose access to crucial cystic fibrosis medication if proposed health care reforms are carried out.
More than 200 CF advocates from 47 states held nearly 400 meetings with members of Congress and their staff, and more than 850 advocates from across the country called their members of Congress as part of the CF Foundation's first March on the Hill online Day of Action.