Health Information

 

 

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, M1B 4G8

Canada

Tel: 4164859149

Fax: 4164850960

Tel: 8003782233

Email: info@cysticfibrosis.ca

Internet: http://www.cysticfibrosis.ca



Cystic Fibrosis Trust

11 London Rd

Bromley

Kent, BR1 1BY

United Kingdom

Tel: 02084647211

Fax: 02083130472

Tel: 03003731000

Email: enquiries@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: 441512525696

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: 902323756856

Fax: 902323756856

Email: information@cfww.org

Internet: http://www.cfww.org



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

Children's Hospital Colorado

13123 E 16th Ave. B290

Aurora, CO 80045

Tel: (720)777-2598

Fax: (720)777-7351

Email: joan.hines@childrenscolorado.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.

This information does not replace the advice of a doctor. Healthwise, Incorporated disclaims any warranty or liability for your use of this information. Your use of this information means that you agree to the Terms of Use. How this information was developed to help you make better health decisions.

Healthwise, Healthwise for every health decision, and the Healthwise logo are trademarks of Healthwise, Incorporated.