1. Welcome to the Cystic Fibrosis Patient Assistance Resource Library (PARL) The PARL is a full access online resource to providers, patients, care givers and other health care entities.

2. The Library’s Purpose The library is an online resource for the CF community for letters of medical necessity, journal documents, white papers and links to other online resources needed to ensure the best possible care.

3. Library’s Function. Post current third-party prior authorization and appeal forms, medical necessity criteria, and medical policy/local coverage determinations pertaining to key CF specialty drugs Contact care centers to review library, determine needs for additional resources, and obtain resources for the PARL that may be useful to other centers and CF community. Obtain legislative updates from CFF Advocacy and Public Affairs Department and post on the Library to keep patients and care givers updated on changes that could impact their care.

4. The Library is easily accessible from the Cystic Fibrosis Foundation website. www.cff.orgwww.cff.org Simply scroll over the ‘Living with Cystic Fibrosis’ tab. When the drop down box appears click on ‘Patient Assistance Resources’.

5. This will take you to the list of the access programs offered by the CF Foundation. On this page we have listed all of the available programs As you can see The CF Foundation offers many programs to assist the CF Community

6. CF Patient Assistance Foundation As a non-profit subsidiary of the CF Foundation, the CFPAF helps people with CF afford the medications and devices they need to manage their disease. The CFPAF offers the only national patient-assistance program designed specifically for the CF community. CF Services Pharmacy The only full-service pharmacy that is a wholly owned subsidiary of the CF Foundation and specializes in CF medications, patient advocacy and reimbursement support. CF Legal Information Hotline Sponsored by the CF Foundation, the CF Legal Information Hotline provides free information about the laws that protect the rights of individuals with CF. Patient Assistance Resource Library An online database that provides documents, template letters and other tools for people with CF, caregivers and insurers.

7. The Mutation Analysis Program (MAP) To help people with CF and families make informed decisions about treatment options, MAP provides free and confidential genetic testing to patients with a confirmed diagnosis of cystic fibrosis. The program is available to people who have not yet had genetic testing to determine their CF mutations or who have been tested previously but still have one or more unknown mutations. To learn more about MAP, talk with your CF doctor or care center. Providers or care centers may contact MAP directly at 1-888- 315-4154, option 2, MAP@cff.org.MAP@cff.org Advocacy and Public Policy The CF Foundation represents the CF community at all levels of government to ensure that people with the disease have access to the care and treatment they need to help them live longer and healthier lives.

8. After clicking on the Patient Assistance Resource Library link, you will be redirected to this page. Click on the “Search Library” to enter the site.

9. From the Home page of the Library you will be able to search key words or phrases.

10. You can also refine your search by selecting the Refine Search button.

11. Utilizing a general search for Cayston, you will be shown every item in the PARL that references Cayston.

12. In this search for ‘Letters’ you will be shown every available letter in addition to insurance check lists.

13. Since this site is available to the general public, we have provided an extensive glossary of terms related to CF.

14. Do you have questions or suggestions? We will respond to all inquiries within two business days.

15. The ‘Online Resources’ allows you to link directly into other commonly used web sites.

16. The ‘How To’ tab generated the most searched and downloaded documents.