Resources- Specific Diagnosis Card Catalog- Cystic Fibrosis
Who To Contact
Canadian Cystic Fibrosis Foundation (CCFF)
2221 Yonge Street, Suite 601
Toronto, Ontario, Canada, M4S 2B4
(416) 485-9149
Fax: (416) 485-0960
1-800-378-2233 (Toll free from Canada only)
E-mail: info@cysticfibrosis.ca
Web: www.ccff.ca
The Canadian Cystic Fibrosis Foundation (CCFF) has a mission to provide a brighter future for every child born with Cystic Fibrosis. Through its research and clinical programmes, the Foundation helps to provide outstanding care for affected individuals, while pursuing the quest of a cure or control for the disease. The Foundation provides information and training for scientific and health care personnel and distributes educational material for patients, families, and the general public regarding CF.
The Canadian Cystic Fibrosis Foundation has chapters help to promote public awareness of the CF cause through displays, speaking engagements, organize fundraising events, provide members with mutual self-help and support in coping with cystic fibrosis on a daily basis. There are chapters in every province in Canada. Call for the location of the one nearest you. Major support groups for CCFF are The Kinsmen and Kinette Clubs of Canada and the Shinerama, which is an organization of college students.
CCFF publishes, Candid Facts, and brochures including; "Your Child and Cystic Fibrosis," "A Teachers Guide to Cystic Fibrosis," "Carrier Testing of Cystic Fibrosis," and "You Were Asking. " They also have a video catalogue of materials that may be borrowed, free of charge, upon request. Call for further information.
Cystic Fibrosis Foundation
Foundation Office
6931 Arlington Road
Bethesda, MD 20814
1-301-951-4422
1-800-FIGHT CF
E-mail: info@cff.org
Web: www.cff.org
The The Cystic Fibrosis Foundation (CFF) was established in 1955 to raise money for research to find a cure for Cystic Fibrosis (CF) and to improve the quality of life for the 30,000 children and young adults with the disease.
CCF funds its own network of 14 research centers at leading universities and medical schools throughout North America. Additionally, CCF supports clinical trials at its care centers to test new drug therapies including ways to fight respiratory infection, to thin the CF mucus and to reduce inflammation.
CCF also finances 115 CFF care centers nationwide which provide high-quality, specialized care for those with CF. These centers, located at major teaching and community hospitals, offer comprehensive diagnosis and treatment for people with CF and their families. Professional education and training are offered at both research and care centers. CCF offers general information publications on a cariety of subjects including CF research updates, health insurance and financial assistance programs.
Where To Go Chat With Others
cfparents
This is a place to discuss issues specific to raising children who have been diagnosed with cystic fibrosis... a place for parents of children with cf to come to for support and information. Open and frank discussions are welcome. Discussion of mature content may take place here. Bring your sense of humor! This is an INCLUSIVE list. All parents who have a child/children with cystic fibrosis are welcome here.
Cystic-L Community Page
CYSTIC-L is a free email service dedicated to the exchange of information and support specific to cystic fibrosis.
Cystic_Fibrosis
This is an International Rare Disease Support Network (IRDSN) support group open to anyone interested in making friends, sharing information and providing support for persons affected by 'Cystic Fibrosis.'
cysticfibrosissupport
Cystic Fibrosis, or CF as it is commonly called, is a disease caused by an inherited genetic defect. About 1 in 23 people in the United States carry at least one defective gene, which makes it the most common genetic defect of its severity in the United States. People with Cystic Fibrosis suffer from chronic lung problems and digestive disorders.
Learn More About It
An FAQ (Freqently Asked Questions)
From the Canadian Cystic Fibrosis Foundation.
A Family Guide to Cystic Fibrosis Genetic Testing
Cystic Fibrosis Information
from OMIM
Links
Cystic Fibrosis Trust
United Kingdom
Canadian Cystic Fibrosis Foundation
Cystic Fibrosis Worldwide (CFW)
Cystic Fibrosis Education & Information Web Page
Cystic Fibrosis Research, Inc (CFRI)
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