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Respiratory, Pulmonary Diseases, Conditions,
Cystic Fibrosis, CF, Chronic Illnesses

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Canadian Cystic Fibrosis Foundation:"In the late 1930s, cystic fibrosis didn't even have a name. Canada first joined the battle against cystic fibrosis in the late 1950s, with a historic meeting of concerned and anxious parents. The months that followed were hectic, but productive. By the early 1960s the original Board of Directors had drafted by-laws for the Foundation and its chapters, and had moved to create a strong medical committee. At first they met with obstacles for obtaining federal status. But their persistence paid off, and on July 15, 1960, the Canadian Cystic Fibrosis Foundation was incorporated by Federal Letters Patent."
Canadian Cystic Fibrosis Foundation
2221 Yonge Street, Suite 601 Toronto, Ontario M4S 2B4
Telephone: (416) 485-9149 1-800-378-2233 (Toll free from Canada only)
Fax: (416) 485-0960 (416) 485-5707
E-mail: info@cysticfibrosis.ca
http://www.ccff.ca

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Cochrane Cystic Fibrosis & Genetic Disorders Review Group:"The Cochrane Cystic Fibrosis & Genetic Disorders Review Group comprises an international network of health care professionals, researchers and consumers preparing, maintaining, and disseminating systematic reviews of randomised control trials in the treatment of cystic fibrosis and other genetic disorders. Activities of the Group are co-ordinated by its Editorial Base, located within the Department of Child Health, University of Liverpool, United Kingdom. We very much welcome interest from new consumers, referees and potential reviewers."
http://www.liv.ac.uk/cfgd/

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Cystic Fibrosis Foundation:"Cystic fibrosis (CF) is a genetic disease affecting approximately 30,000 children and adults in the United States. A defective gene causes the body to produce an abnormally thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. These thick secretions also obstruct the pancreas, preventing digestive enzymes from reaching the intestines to help break down and absorb food."
The Cystic Fibrosis Foundation
6931 Arlington Road Bethesda, Maryland 20814
By Phone: (301) 951-4422 or (800) FIGHT CF (344-4823)
By Fax: (301) 951-6378, info@cff.org
http://www.cff.org

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Cystic Fibrosis Parents:"In 1998, my son was born with meconium ileus and diagnosed with cystic fibrosis by sweat test before one week of age. The Internet was a great source of information and comfort for me, but I found much of the information about cystic fibrosis to be overwhelming for a parent of a newly-diagnosed child. There were, it seemed, others who felt the same and needed a support system specificly for parents whose children have cystic fibrosis. The beauty of the Internet is that it allows many people from all corners of the Earth to communicate and relate to one another about our common thread, CF. The fact that people with cystic fibrosis are not encouraged to spend time together due to the risk of cross-infection of organisms is another benefit of online interaction. Less than one year after my son was born, I founded the CF Parents email list to offer support to (and receive support from) other parents who were confronted with the challenges of raising a child who has CF."
http://www.cfparents.org/

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Discussion Forums, Cystic Fibrosis Medicine.com:
http://www.cysticfibrosismedicine.com/forums_pub/default.asp

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Cystic Fibrosis Mutation Database:"This database is devoted to the collection of mutations in the CFTR gene and is currently maintained by the laboratory of Lap-Chee Tsui on behalf of the international Cystic Fibrosis genetics research community. It was initiated by the Cystic Fibrosis Genetic Analysis Consortium in 1989 to increase and facilitate communications among CF researchers. The specific aim of the database is to provide CF researchers and other related professionals with up to date information about individual mutations in the CFTR gene."
http://www.genet.sickkids.on.ca/cftr/

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Cystic Fibrosis Trust (UK):"The Cystic Fibrosis Trust is the UK's only national charity dedicated to all aspects of Cystic Fibrosis (CF). It funds medical research aimed at understanding, treating and curing Cystic Fibrosis. It also aims to ensure people with CF receive the best possible care and support."
CF Trust
11 London Road, Bromley Kent BR1 1BY
Tel: 020 8464 7211
http://www.cftrust.org.uk/

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Cystic Fibrosis Worldwide:"Cystic Fibrosis Worldwide works to promote access to appropriate care and education to those people living with the disease in developing countries and to improve the knowledge of CF among medical professionals and governments worldwide. (download our annual report for more information on current projects). Cystic Fibrosis Worldwide acts as an international platform for the exchange of information."
Cystic Fibrosis Worldwide
56 Central Street Hudson MA 01749 USA
http://www.cfww.org/

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Cystic Fibrosis Tutorial, Medline Plus:"This tutorial is published by the Patient Education Institute and licensed by the National Library of Medicine."
Office of Communications and Public Liaison National Library of Medicine
8600 Rockville Pike Bethesda, Maryland 20894
Phone: (301) 496-6308 Fax: (301) 496-4450 email: publicinfo@nlm.nih.gov
http://www.nlm.nih.gov/medlineplus/tutorials/cysticfibrosis/htm/index.htm

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Cystic Fibrosis, SharkTank Research:"SharkTank Research was formed in 1998 to find a cure to cystic fibrosis through extensive research, critical analysis, and the exchange of ideas. The members of the group either have cystic fibrosis or have children with it. Cystic fibrosis is the most common genetic, fatal disease. Fortunately, over the last decade, there have been major advancements in CF research, including the hallmark discovery in 1989 of the malfunctioning CFTR protein, which is the cause of the disease. Since the discovery of this missing protein, the number of scientific studies published on CF has increased from approximately 300 per year to over 1000 per year. Because of the sheer volume of studies, many are published and then shelved and forgotten, which leaves many potential therapies unexplored. To lose a single life to this disease due to unexplored science or lack of organization is tragic."
ShaRe Research International
c/o Jei Roberts
65815 Avenida Pico Desert Hot Springs, CA 92240
USA
http://www.sharktank.org/

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Last updated by Andrew Lopez, RN on Thursday May 20, 2010


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