Cystic Fibrosis Links
Taking control of your journey with cystic fibrosis starts with having the right information and support. Below you'll find links for patient advocacy and research, education, community and support for parents and caregivers.
- Blooming Rose Foundation: The Blooming Rose Foundation (BRF) was created to give hope to families immediately following Cystic Fibrosis diagnosis. BRF offers an online resource for individuals, families, and friends to find up to date research, links, and ways to connect with other families and adults with CF.
- Boomer Esiason Foundation: This Foundation is committed to raising awareness about CF and funding CF research, and it provides numerous ways to get involved in the fight against CF.
- CF Living: This online community is a place for CF patients and caregivers to get advice, share stories and connect with others fighting this disease.
- Cystic Fibrosis Foundation: The Cystic Fibrosis Foundation is the leading organization in the United States devoted to cystic fibrosis, and its website provides a wealth of information. The mission of this nonprofit, donor-supported organization is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.
- Cystic Fibrosis Research, Inc.: CFRI is a nonprofit organization founded in 1975. CFRI's mission is to fund research, provide educational and personal support, and spread awareness of cystic fibrosis (CF), a life-threatening genetic disease.
- Cystic Fibrosis.com: A community for people concerned with cystic fibrosis. Contains interactive forums and blogs to find support and share information; celebrate and remember with the community.
- Cystic Fibrosis Services Pharmacy: This one-stop pharmacy is a subsidiary of the Cystic Fibrosis Foundation, letting you order and refill your prescriptions online.
- Cystic-L: CYSTIC-L is a free email service dedicated to the exchange of information and support specific to cystic fibrosis. Members include those with cystic fibrosis, as well as family members, medical professionals, researchers and more.
- CysticLife Community: CysticLife.org is a social network just for the cystic fibrosis community. This web site provides a place for the CF community to share tips, questions, ideas, experiences and encouragement.
- Mayo Clinic: Get a full overview of the disease, along with information about symptoms, causes, risk factors and treatments, as well as what to expect during appointments with your medical care team.
- Pulmozyme Access Solutions: This program can help eligible patients receive financial support for covering the cost of Pulmozyme.
- WebMD Video: WebMD hosts information and videos, including this video about a program for people with CF that is being run at one California CF Care Center.
The contents of the above websites are not intended for the purpose of disease diagnosis or a substitute for information that is provided to you by your physician. You should always discuss your individual symptoms and any questions you have with your physician. Genentech, Inc. is not responsible for the accuracy of the information contained on third-party websites and does not recommend or endorse the content provided on these websites.
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