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Additional links and resources for understanding cystic fibrosis

The more you know about cystic fibrosis, the easier it will be to manage it. Click on the links below to find helpful information on patient advocacy, research, education, cystic fibrosis 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 cystic fibrosis.

Boomer Esiason Foundation
This foundation is committed to raising awareness about cystic fibrosis and funding cystic fibrosis research, and it provides numerous ways to get involved in the fight against cystic fibrosis.

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 ensure 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)
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, a life-threatening genetic disease.

CysticFibrosis.com
A community for people concerned with cystic fibrosis. The website contains interactive forums and blogs to find support and share information, while celebrating and remembering with the community.

Cystic-L
Cystic-L is a free email support group 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.org
A social network just for the cystic fibrosis community. This website provides a place for the cystic fibrosis 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.

 

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 doctor. You should always discuss your individual symptoms and any questions you have with your doctor. 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.