Cystic fibrosis organizations
Links to helpful information for you and your patients
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- 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.
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.
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.
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.
Community: CysticLife.org is a social network just for the
cystic fibrosis community. This positive, uplifting website is the
central location for the CF community to share tips, questions,
ideas, experiences, and encouragement.
Mayo Clinic: The CF section of the Mayo Clinic
website can provide your patients with a full overview of the
disease, along with information about symptoms, causes, risk
factors, and what to expect during the treatment process.
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.
Important Safety Information & Indication
Pulmozyme (dornase alfa) is indicated for daily administration in conjunction with standard therapies for the management of cystic fibrosis (CF) patients to improve pulmonary function.
In CF patients with an FVC ≥ 40% of predicted, daily administration of Pulmozyme has also been shown to reduce the risk of respiratory tract infections requiring parenteral antibiotics.
Pulmozyme is contraindicated in patients with known hypersensitivity to dornase alfa, Chinese Hamster Ovary cell products, or any component of the product.
The most common adverse reactions associated with the use of Pulmozyme include: voice alteration, pharyngitis, rash, laryngitis, chest pain, conjunctivitis, rhinitis, decrease in FVC of ≥ 10%, fever, dyspepsia, and dyspnea. There have been no reports of anaphylaxis attributed to the administration of Pulmozyme. Mild to moderate urticaria and mild skin rash have been observed and have been transient.
The safety and effectiveness of Pulmozyme have been established in pediatric patients 5 years of age and older. The safety of Pulmozyme, 2.5 mg by inhalation, was studied with 2 weeks of daily administration in 65 patients with cystic fibrosis aged 3 months to < 5 years. While clinical trial data are limited in pediatric patients younger than 5 years of age, the use of Pulmozyme should be considered for pediatric CF patients who may experience potential benefit in pulmonary function or who may be at risk of respiratory tract infection.
The safety of Pulmozyme, 2.5 mg by inhalation, was studied with 2 weeks of daily administration in 98 pediatric patients with cystic fibrosis 3 months to 10 years of age (65 aged 3 months to < 5 years, 33 aged 5 to ≤ 10 years). The PARI BABY™ reusable nebulizer (which uses a facemask instead of a mouthpiece) was utilized in patients unable to demonstrate the ability to inhale or exhale orally throughout the entire treatment period (54/65, 83% of the younger; and 2/33, 6% of the older patients). Overall, the nature of adverse reactions was similar to that seen in the placebo-controlled trials in older patients. The number of patients reporting cough was higher in the younger age group as compared to the older age group (29/65, 45%; compared to 10/33, 30%) as was the number reporting moderate to severe cough (24/65, 37%; compared to 6/33, 18%). The number of patients reporting rhinitis was higher in the younger age group as compared to the older age group (23/65, 35%; compared to 9/33, 27%) as was the number reporting rash (4/65, 6% as compared to 0/33, 0%).