Cystic Fibrosis

National Organization for Rare Disorders, Inc.

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It is possible that the main title of the report Cystic Fibrosis is not the name you expected.

Disorder Subdivisions

  • None

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 nearly 50 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.

Supporting Organizations

American Lung Association

55 W. Wacker Drive
Suite 1150
Chicago, IL 60601
Tel: 1-800-548-8252

Canadian Cystic Fibrosis Foundation

2221 Yonge Street
Suite 800
Toronto, Ontario M4P 2C9
Tel: 416-485-9149
Fax: 416-485-0960
Tel: 1-800-378-2233

Childhood Liver Disease Research and Education Network

c/o Joan M. Hines, Research Administrator
Children's Hospital Colorado
Aurora, CO 80045
Tel: (720)777-2598
Fax: (720)777-7351

Cochrane Cystic Fibrosis and Genetic Disorders Group

Institute of Child Health, University of Liverpool
Alder Hey Children's NHS Foundation Trust
Liverpool, L12 2 AP
United Kingdom
Tel: 441512525696

Cystic Fibrosis Foundation

6931 Arlington Rd.
Bethesda, MD 20814
Tel: (301)951-4422
Fax: (301)951-6378
Tel: (800)344-4823

Cystic Fibrosis Research, Inc.

Bayside Business Plaza
2670 Bayshore Parkway
Mountain View, CA 94043
Tel: (650)404-9975
Fax: (650)404-9981

Cystic Fibrosis Trust

11 London Rd
Kent, BR1 1BY
United Kingdom
Tel: 2084647211
Fax: 2083130472
Tel: 3003731000

Cystic Fibrosis Worldwide

Evka 3 Mahallesi
127/19 SOKAK NO/25
Bornova, Izmir,
Tel: 902323756856
Fax: 902323756856

Genetic and Rare Diseases (GARD) Information Center

PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311

Global Fibrosis Foundation

Yale Dermatopathology Service
15 York Street, LMP 5031
New Haven, CT 06520-8059
Tel: (727)433-8180

NIH/National Institute of Diabetes, Digestive & Kidney Diseases

Office of Communications & Public Liaison
Bldg 31, Rm 9A06
Bethesda, MD 20892-2560
Tel: (301)496-3583

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, go to and click on Rare Disease Database under "Rare Disease Information".

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only.

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This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

Last Updated:  3/15/2016
Copyright  2014 National Organization for Rare Disorders, Inc.