NORD's
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 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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information, we encourage you to contact your personal physician or the agencies listed as
"Resources" on this report.
Copyright 1984, 1985, 1986, 1987, 1988, 1989, 1990, 1991, 1992, 1994, 1995, 1996. 1997, 1998, 1999, 2000, 2002, 2007, 2009
NORD is very grateful to Ran D. Anbar, MD, Professor of Pediatrics and Medicine,
SUNY Upstate Medical University, for assistance in the preparation of this report.
Synonyms of Cystic Fibrosis
- CF
- fibrocystic disease of pancreas
- mucoviscidosis
- pancreatic fibrosis
Disorder Subdivisions
General Discussion
Cystic fibrosis is a genetic disorder that often affects multiple organ systems of the body. Cystic fibrosis is characterized by abnormalities affecting certain glands (exocrine) of the body especially those that produce mucus. Saliva and sweat glands may also be affected. Exocrine glands secrete substances through ducts, either internally (e.g., glands in the lungs) or externally (e.g., sweat glands). In cystic fibrosis, these secretions become abnormally thick and can clog up vital areas of the body causing inflammation, obstruction and infection. The symptoms of cystic fibrosis can vary greatly in number and severity from one individual to another. Common symptoms include breathing (respiratory) abnormalities including a persistent cough, shortness of breath and lung infections; obstruction of the pancreas, which prevents digestive enzymes from reaching the intestines to help break down food and may result in poor growth and poor nutrition; and obstruction of the intestines. Cystic fibrosis is slowly progressive and often causes chronic lung damage, which eventually results in life-threatening complications. Because of improved treatments and new treatment options, the outlook and overall quality of life of individuals with cystic fibrosis has improved and more than 40 percent of individuals with the disorder are adults. Cystic fibrosis is caused by mutations to the cystic fibrosis transmembrane conductance regulator (CFTR) gene and is inherited as an autosomal recessive trait.
Organizations related to Cystic Fibrosis
- American Lung Association
61 Broadway, 6th Floor
New York NY 10006
Phone #: 212-315-8700
800 #: 800-586-4872
e-mail: N/A
Home page: http://www.lungusa.org
- Canadian Cystic Fibrosis Foundation
2221 Yonge Street
Suite 601
Toronto
Ontario Intl M1B 4G8
Phone #: (41-6) -485-9149
800 #: (80-0) -378-2233
e-mail: info@cysticfibrosis.ca
Home page: http://www.cysticfibrosis.ca
- Cochrane Cystic Fibrosis and Genetic Disorders Group
Institute of Child Health, University of Liverpool
Alder Hey Children's NHS Foundation Trust
Liverpool None L12 2 AP
Phone #: +44- (0-) 151 252 5696
800 #: --
e-mail: nikkij@liverpool.ac.uk
Home page: http://www.cfgd.cochrane.org/en/index.html
- Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda MD 20814
Phone #: 301-951-4422
800 #: 800-344-4823
e-mail: info@cff.org
Home page: http://www.cff.org
- Cystic Fibrosis Research, Inc.
Bayside Business Plaza
2670 Bayshore Parkway
Suite 520
Mountain View CA 94043
Phone #: 650-404-9975
800 #: --
e-mail: cfri@cfri.org
Home page: http://www.cfri.org
- Cystic Fibrosis Trust
11 London Rd
Bromley
Kent None BR1 1BY
Phone #: 084-5 8-59 1000
800 #: --
e-mail: AskTheExpert@cftrust.org.uk
Home page: http://www.cftrust.org.uk
- Cystic Fibrosis Worldwide
12 5/7 Sokak No. 7
Villa 2 Brickent
Sitesi Evka 3
Bornova, Izmir None None
Phone #: 90 -232- 375 6856
800 #: --
e-mail: information@cfww.org
Home page: http://www.cfww.org
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: ordr@od.nih.gov
Home page: http://rarediseases.info.nih.gov/Default.aspx
- Global Fibrosis Foundation
5036 Dr. Phillips Boulevard
Suite 244
Orlando FL 32819
Phone #: 407-909-0753
800 #: 800-872-6874
e-mail: globalfibrosis@gmail.com
Home page: http://www.globalfibrosis.com
- MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay WI 54301-1243
Phone #: 920-336-5333
800 #: 877-336-5333
e-mail: mums@netnet.net
Home page: http://www.netnet.net/mums/
- Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Phone #: 310-264-0826
800 #: N/A
e-mail: getinfo@madisonsfoundation.org
Home page: http://www.madisonsfoundation.org
- March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains NY 10605
Phone #: 914-997-4488
800 #: 888-663-4637
e-mail: Askus@marchofdimes.com
Home page: http://www.marchofdimes.com
- NIH/National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda MD 20892-3570
Phone #: 301-654-3810
800 #: 800-891-5389
e-mail: nddic@info.niddk.nih.gov
Home page: http://www.niddk.nih.gov
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