P.O.W.E.R. Surfers :: Windsor Public Library

Cystic Fibrosis Websites

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Ask Noah About: Cystic Fibrosis
“NOAH seeks to provide high quality full-text health information for consumers that is accurate, timely, relevant and unbiased.” The Cystic Fibrosis page presents some basics about cystic fibrosis, diagnostic and genetic testing, information for parents of children with cystic fibrosis, care and treatment, information resources, health insurance, newsletters, online resources, research, treatment and support centers. This site provides a large number of credible links to information on cystic fibrosis. It is an excellent center for directions to resources on CF, both general and specific.

Canadian Cystic Fibrosis Foundation (Canadian Site)
The Canadian Cystic Fibrosis Foundation is an organization that strives to increase research and therapy in the field of cystic fibrosis to improve the quality of life of those affected by cystic fibrosis. It provides information about cystic fibrosis as well as a timeline of the improvements in cystic fibrosis treatment over the past 40 years, a newsletter (available in Adobe Acrobat PDF format), research reports, and links to clinics that offer cystic fibrosis treatment and lung transplantation. The CCFF also provides a List Server for information exchange among those interested in cystic fibrosis. The List Server is not moderated.

CFRI: Cystic Fibrosis Research, Inc.
Cystic Fibrosis Research, Inc. is a non-profit volunteer organization founded in 1975. CFRI funds research in the field of cystic fibrosis through donations and provides a number of educational programs. This includes the CFRI newsletter, brochures, and meetings and talks on CF research and daily living. They also fund an annual educational conference, and a summer retreat for children with CF. Included on the web site is some basic information on CF, back issues of the CFRI newsletter, the latest news in research and management, and a listing of conferences and fundraisers.

Cystic Fibrosis 101
Cystic Fibrosis Information, with over 2,000 links, a very good resource for CF information on the internet.

Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation funds a number of research and care centers to “assure the development of the means to cure and control cystic fibrosis.” The CFF web site is host to information on cystic fibrosis including recent news in care and research, facts about the disease, a number of on-line publications and video publications available to order, information on current clinical trials, locations for a number of care, research, and laboratory organizations funded by the CFF, and off-site links for further information.

Cystic Fibrosis Resources for Daily Living and Information
CysticFibrosis.com offers a large volume of information regarding cystic fibrosis. Information provided includes recent news from the medical community, CF center information, clinical trials, gene therapy, a number of external links, a listing of international (including Canadian) CF associations, current events in CF research and treatment, a listing of available newsletters from various organizations, and a listing of books relevant to CF. An excellent source of information in many aspects of Cystic Fibrosis study.

Cystic-L: Cystic Fibrosis Info and Support
“CYSTIC-L is a free email service dedicated to the exchange of information and support specific to cystic fibrosis.” Established in 1994, it is an e-mail discussion board consisting of over 500 members with an interest in cystic fibrosis. Also provided on Cystic-L is a web-based forum similar to the email service, archives of the discussion board, photos of some members of Cystic-L, recent news in research, external links, and a comprehensive handbook about cystic fibrosis, treatments, coping, diagnosis information, and large volume of articles on day-to-day living with cystic fibrosis. An excellent source for medical and personal information as well as support for persons with cystic fibrosis and those interested in cystic fibrosis.