Resources & Links
There is so much information on the internet about CF, it can be overwhelming sometimes. You can start your search using these external websites to learn more about patient advocacy and research, education, community, and support especially for parents. Many of these sites are great resources, but remember that Genentech does not endorse or manage any of the content on these sites.
Patient advocacy and research
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):
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.
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.
Education
Amazon.com Books — Cystic Fibrosis: The Ultimate Teen Guide:
Intro to CF–the facts, the challenges, the complications, and the outlook for the future. Personal stories, including the author's account of going to CF camp for several years, the friends she made there, and the ones she lost.
BC Children's Hospital in Vancouver — Cystic Fibrosis Transition Program:
See how one CF Care Center in Vancouver handles their pediatric to adult CF Care Center transitions.
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.
Children's Hospital Boston — Adult Transition:
Learn about the importance of transitioning to adult care, as discussed by this Boston CF Care Center.
Connecticut Children's Medical Center — Cystic Fibrosis Adult Transition Programs:
Read about the services offered at one CF Care Center in Connecticut to help patients with CF transition to adult care.
CysticFibrosis.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.
IME Video Library — Reducing Isolation: An Adult Cystic Fibrosis Support Group:
Sponsored by the University of Wisconsin-Madison, this video shows a support group talking about coping with CF.
Lucile Packard Stanford Children's Hospital — Center of Excellence for Pediatric Cystic Fibrosis and Pulmonary Diseases:
Get contact information for one California CF Care Center, as well as general information about CF Care Centers.
Mayo Clinic — Cystic Fibrosis: Coping Skills:
Information about coping skills from the Mayo Clinic, a not-for-profit medical practice dedicated to the diagnosis and treatment of virtually every type of complex illness.
PubMed article — Association of poor clinical status and heavy exposure to tobacco smoke in patients with cystic fibrosis:
Article examines the relationship between smoking and CF.
Pulmozyme.com:
Get information about CF, how Pulmozyme works, and find help paying for Pulmozyme.
Tips for your spouse — How to Cope With a Chronically Ill Spouse:
General tips for dealing with a chronically ill spouse.
WebMD Video — Managing Cystic Fibrosis:
Web MD hosts information and videos, including this video about a program for people with CF that is being run at one California CF Care Center.
YouTube.com — Cystic Fibrosis Foundation channel — CysticFibrosisUSA:
A channel on the popular video-sharing website maintained by the Cystic Fibrosis Foundation. There are several short videos on the topic of cystic fibrosis and a comments section where subscribers — mostly patients or their family members — share stories, links, advice, useful information and support.
Community
CF2Chat:
A forum and chat website for people with cystic fibrosis. The site also includes a section called CF in the News, a photo gallery and a recipe page. There is also an extensive section dedicated to therapy and health tips.
CysticFibrosis.com — Forums:
The heavily trafficked forums section of CysticFibrosis.com includes user blogs. It boasts over 7,500 members and a searchable database of over 20,000 topics.
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 website provides a place for the CF community to share tips, questions, ideas, experiences and encouragement.
Facebook.com Group — Cystic Fibrosis:
A group page within the Facebook community network designed for people with cystic fibrosis, family members, and doctors who treat it. A place to share information, personal experiences and stories, and offer support and advice.
Facebook.com Group — Adults with Cystic Fibrosis — A living legacy!:
“A place where adults living with cystic fibrosis can share their life stories, adventures and goals. Coming together to support each other.” Includes many relevant discussion topics and many heartfelt posts from the over 200 group members.
For parents
Cystic Fibrosis Services Pharmacy:
This one-stop pharmacy is a subsidiary of the Cystic Fibrosis Foundation, letting you order and refill your prescriptions online.
Google Book Search — Cystic Fibrosis: A Guide for Patients and Family:
Order a book specifically for patients with cystic fibrosis and their families. Explains the disease process, outlines the fundamentals of diagnosing and screening, and addresses the challenges of treatment for those living with CF. Includes new material on carrier testing, infection control, and more.
Kids Health — Parents — Cystic Fibrosis:
The Kids Health resource on cystic fibrosis, a genetic disorder that particularly affects the lungs and digestive system and makes kids who have it more vulnerable to repeated lung infections, affects more than 30,000 American children and young adults.
News For Parents.org — Cystic Fibrosis Advanced in Treatment:
An extensive cystic fibrosis resource for parents. A collection of basic information, expert advice, and top news stories.
Parenting a Child with Cystic Fibrosis:
Start with these recommended resources for finding facts, strategies, and advice on parenting children with cystic fibrosis.
Parenting a Child with Cystic Fibrosis:
Start with these recommended resources for finding facts, strategies, and advice on parenting children with cystic fibrosis.
Pulmozyme® Access Solutions®:
This program can help eligible patients receive financial support for covering the cost of Pulmozyme.
Indication and Usage
Daily administration of Pulmozyme® (dornase alfa) Inhalation Solution along with standard therapies is indicated in the management of cystic fibrosis patients to improve lung function. In patients with a forced vital capacity (volume of air exhaled with maximum effort and speed) greater than or equal to 40% of predicted, daily administration of Pulmozyme has also been shown to reduce the risk of respiratory tract infections requiring the administration of injectable antibiotics. In our pivotal study, safety and efficacy of daily administration has not been studied in patients beyond 12 months.
Important Safety Information
Pulmozyme should not be used in patients who are allergic to any of its ingredients
Pulmozyme should be used along with standard therapies for cystic fibrosis
When starting Pulmozyme therapy, patients may experience change in or loss of their voice, discomfort in the throat, chest pain, red watery eyes, rash, dizziness, fever, or runny nose
These side effects are usually mild and short-lived
The effect of Pulmozyme on exercise tolerance has not been established in adults and children
For further information, please see the Pulmozyme full prescribing information. If you have questions, please discuss them with your CF healthcare team.
