For those of us who can’t take modulators, it can sometimes feel like you’ve been left behind. But I have found hope and motivation by participating in clinical trials.
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This year’s program marked the largest in-person advocacy event in the Foundation’s history.
Take it from me, dating with cystic fibrosis can be hard — from not having the energy to keep up with our partners to dealing with all the not-so-sexy aspects of the disease. But it’s important to not settle for anything less than the love and support we deserve.
Living with CF means I quickly became familiar with the patient side of the health care field. My experiences in the hospital have motivated me to become the kind of nurse that listens to and advocates for their patients.
In a letter to Missouri's House Committee on Health and Mental Health Policy, the Cystic Fibrosis Foundation expressed its support for HB 1628, which would require insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing requirements.
In a letter to the House Energy & Commerce Health Subcommittee, the Foundation joins a cohort of patient organizations to stress the importance of addressing antimicrobial resistance and prioritize the passage of the PASTEUR Act.
In a letter to the House Energy & Commerce Committee, the Cystic Fibrosis Foundation states its support for legislation that addresses antimicrobial resistance, orphan drug exclusivity, and access to specialized care across state lines.
In response to a request for information from the U.S.
In a letter to Alaska's Health and Social Services Committee, the Cystic Fibrosis Foundation expressed its support to reduce the administrative burden and delays in care by establishing a gold carding provision that would exempt providers from prior authorization requirements if 90 percent of their requests were approved in the preceding 12 mont