Free Cystic Fibrosis Resources
Patient Assistance Resource Library
When it comes to navigating the health care coverage maze, people with cystic fibrosis and their families can now turn to a new online hub for information and guidance.
The Cystic Fibrosis Foundation recently expanded its network of patient assistance resources with the launch of the Patient Assistance Resource Library on cff.org.
The Library is a simple, searchable online tool designed to help people with cystic fibrosis gain and maintain health care coverage.
“The Library is our most comprehensive information resource for CF patient assistance to date,” said Robert J. Beall, Ph.D., president and CEO of the Foundation. “We hope that it will serve as a useful tool for CF patients and their families as they navigate the health care system.”
The new Library brings together into one place the information, tools and materials that the Foundation and CF care providers use every day to help patients access the care they need to stay healthy.
Now patients will be able to easily search the Library for information on patient assistance programs for CF medications, get how-to guides for navigating common insurance obstacles and find sample letters to insurance companies for medical necessity and prior authorization. Providers and insurers can also access the Library to find CF care guidelines, evidence-based journal articles and white papers for medical professionals.
Mutation Analysis Program (MAP)
There are more than 1,000 different cystic fibrosis mutations. A simple genetic test can help identify which mutations a person carries.
The Mutation Analysis Program (MAP) offers free genotyping to cystic fibrosis patients who have not had genetic testing, or who have been tested but still have one or more unknown mutations.
Knowing a patient’s genotype can help doctors and patients make informed decisions about their treatment options.
The program is free and confidential, and there are no income or insurance requirements for participating. Patients must be diagnosed with cystic fibrosis, and have one or both CFTR mutations unknown.
The Cystic Fibrosis Foundation will cover the cost of the mutation analysis testing. However, the patient or CF care center is responsible for the cost of the blood sample, and shipping and postage for mailing the sample to the lab.
If you would like to learn more about the MAP and how you can participate, talk to your CF care center.
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