Cystic Fibrosis

Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814
Phone: (800) 344-4823 [FIGHT-CF] or (301) 951-4422
Fax: (301) 951-6378
E-mail: info@cff.org
Web site: www.cff.org/ Chapters and Care Centers Teachers Guide to Cystic Fibrosis Legislataive Action Clinical trials What is CF

International Sites:

Association Quebecoise de Fibrose Kystique, Canada, french
Belgian Cystic Fibrosis Association, flemish, french
Cystic Fibrosis Foundation, Canada, research, chapters, clinics, therapy, english, french
Cystic Fibrosis Worldwide merge of International Cystic Fibrosis Adults (IACFA) and International Cystic Fibrosis (Mucoviscidosis) Association ICF(M)A or (ICFMA)
CF - Selbsthilfe Bundesverband e.V., german
la Fibrosis Quistica (FQ), JM Pulido, Spain
Fibrosis Quistica, AE González Menéndez, Spain
Landsforeningen til Bekæmpelse af Cystisk Fibrose Danish CF Association
Mukoviszidose e.V. (German CF Association)
Nederlandse Cystic Fibrosis Stichting (Dutch CF Association, The Netherlands, English section)
S.O.S. Mucoviscidose, French CF National Association
Udo Grün's Mukoland, cystic fibrosis and sports, german
Cystic Fibrosis Information in other Languages (French, Spanish, Portuguese, Swedish, Dutch, German , and Danish)

Information:

Boomer Esiason Foundation
Cystic Fibrosis Carrier Screening, American Society of Human Genetics, 1992
Cystic Fibrosis - Cystic Fibrosis Research Inc. (CFRI), California, research and education
Cystic Fibrosis Carrier Testing: The Decision Is Yours, American College of Obstetricians and Gynecologists (ACOG) Patient Education Materials
Cystic Fibrosis Testing: What Happens If Both My Partner and I Are Carriers? American College of Obstetricians and Gynecologists (ACOG), Patient Education Materials
CysticFibrosis.com - for families and patients, forums and on-line newsletter
Cystic Fibrosis site, Norma Kennedy
Genome Map - Cystic Fibrosis, genetic basis of CF, genome map, gene sequence
Genetic Testing for Cystic Fibrosis, National Institutes of Health, Consensus Development Statement, Apr 14-16, 1997
Genetic Testing for Cystic Fibrosis Bibliographies, National Library of Medicine
How To Handle Living With Cystic Fibrosis, Y Mathews - for teenagers and young adults
Laboratory Standards and Guidelines for Population-based Cystic Fibrosis Carrier Screening, American College of Medical Genetics, Genetics in Medicine, March/April 2001, Vol. 3 No. 2: 149-154
Living with Cystic Fibrosis - hospitalization, medication, school and social life
Mukoland - my life with Cystic Fibrose, treatment, family, sports, and German mailinglist
Population variation of common cystic fibrosis mutations, Human Mutation 4:167-177 (1994), Cystic Fibrosis Genetic Analysis Consortium, from Hospital for Sick Children, Toronto, Ontario
Preconception and Prenatal Carrier Screening for Cystic Fibrosis, manual for obstetrician-gynecologists and other health care providers, American College of Obstetricians and Gynecologists (ACOG), American College of Medical Genetics (ACMG), and National Institutes of Health (NIH) ad hoc steering committee and work groups on Provider Education, Laboratory Standards, and Patient Education. Guidance for providers on timing of CF carrier screening, screening strategies and process, laboratory testing for carrier screening, and counseling for screening, 1997.
Statement on Cystic Fibrosis Screening, American Society of Human Genetics,1990
Yourman Family CF site and Surviving Cystic Fibrosis, Guide for newly diagnosed families. Insurance, medications, lifestyle, support groups

Burkholderia cepacia information, B. Cepacia complex (sudden decrease in pulmonary function)

Burkholderia cepacia, Cystic Fibrosis, NK Plourde, Canada, also in French
Cepacia, CF Foundation
Cepacia, cross Infection policy, Centers for Disease Control (CDC)

Also See:

National organizations genetic conditions or birth defects
Cystic Fibrosis, Yahoo! search engine
Cystic Fibrosis, AltaVista search engine

Education

Cystic Fibrosis CD-ROM, IVs, MRIs, CT Scans, X-Rays and Blood Tests. Recommended for teens and pre-teens ages 10 to 15 with CF and their families, STARBRIGHT Foundation, Explorer Series® CD-ROMs give seriously ill kids and teens a fun way to find out more about their health care. CD-ROMs are free of charge to children, families and health care professionals.

Cystic Fibrosis Support Group, University of Kansas Medical Center, Kansas City, KS 66160, Phone: (913) 588-6377 Contact: A Liebergen, R.N.

To locate a genetic counselor or clinical geneticist:

Revised January 23, 2009

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