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Cystic Fibrosis

Cystic Fibrosis

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Cystic Fibrosis is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

  • CF
  • fibrocystic disease of pancreas
  • mucoviscidosis
  • pancreatic fibrosis

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 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.

Resources

Cystic Fibrosis Foundation
6931 Arlington Rd.
Bethesda, MD 20814
Tel: (301)951-4422
Fax: (301)951-6378
Tel: (800)344-4823
Email: info@cff.org
Internet: http://www.cff.org

American Lung Association
1301 Pennsylvania Ave NW
Suite 800
Washington, DC 20004
USA
Tel: (202)785-3355
Fax: (202)452-1805
Tel: (800)586-4872
Email: info@lungusa.org
Internet: http://www.lungusa.org

Canadian Cystic Fibrosis Foundation
2221 Yonge Street
Suite 601
Toronto
Ontario, Intl M1B 4G8
Canada
Tel: (416) 485-9149
Fax: (416) 485-0960
Tel: (800) 378-2233
Email: info@cysticfibrosis.ca
Internet: http://www.cysticfibrosis.ca

Cystic Fibrosis Trust
11 London Rd
Bromley
Kent, BR1 1BY
UK
Tel: 0845 859 1000
Fax: 020 8313 0472
Email: AskTheExpert@cftrust.org.uk
Internet: http://www.cftrust.org.uk

NIH/National Institute of Diabetes, Digestive & Kidney Diseases
Office of Communications & Public Liaison
Bldg 31, Rm 9A06
31 Center Drive, MSC 2560
Bethesda, MD 20892-2560
Tel: (301)496-3583
Email: NDDIC@info.niddk.nih.gov
Internet: http://www2.niddk.nih.gov/

Cystic Fibrosis Research, Inc.
Bayside Business Plaza
2670 Bayshore Parkway
Suite 520
Mountain View, CA 94043
USA
Tel: (650)404-9975
Fax: (650)404-9981
Email: cfri@cfri.org
Internet: http://www.cfri.org

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: +44 151 252 5696
Email: nikkij@liverpool.ac.uk
Internet: http://cfgd.cochrane.org

Cystic Fibrosis Worldwide
Evka 3 Mahallesi
127/19 SOKAK NO/25
Dubleks
Bornova, Izmir,
Turkey
Tel: 90 232 375 6856
Fax: 90 232 375 6856
Email: information@cfww.org
Internet: http://www.cfww.org

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
Tel: (877)336-5333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

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
TDD: (888)205-3223
Internet: http://rarediseases.info.nih.gov/GARD/

Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766
Email: getinfo@madisonsfoundation.org
Internet: http://www.madisonsfoundation.org

Global Fibrosis Foundation
5036 Dr. Phillips Boulevard
Suite 244
Orlando, FL 32819
Tel: (407)909-0753
Fax: (407)909-0153
Tel: (800)872-6874
Email: globalfibrosis@gmail.com
Internet: http://www.globalfibrosis.com

Childhood Liver Disease Research and Education Network
c/o Joan M. Hines, Research Administrator
The Children's Hospital
13123 E 16th Ave. B290
Aurora, CO 80045
Tel: (720)777-2598
Fax: (720)777-7351
Email: hines.joan@tchden.org
Internet: http://www.childrennetwork.org

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to www.rarediseases.org 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. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report

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.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

Last Updated:  2/6/2012
Copyright  1984, 1985, 1986, 1987, 1988, 1989, 1990, 1991, 1992, 1994, 1995, 1996. 1997, 1998, 1999, 2000, 2002, 2007, 2009, 2011 National Organization for Rare Disorders, Inc.

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