Links
Please note we are not responsible for the content of external websites.
International CF Organisations
American CF Foundation
UK CF Trust
Canadian CF Foundation
Excellent site for the CF community form around the globe. Formerly International Organisation for Adults with CF and International Cystic Fibrosis (Muscoviscidosis) Association.
CF Research & Medical Information
http://www.cfri.org/indexframes.htm
http://www.nlm.nih.gov/medlineplus/cysticfibrosis.html
cysticfibrosismedicine.com
Excellent site, giving information on the management of CF from a patient and carer perspective.
AntenatalTesting.info
Comprehensive information about antenatal screeining.
Expertreviews.org
Online-only journal, featuring review articles covering the latest developments in Molecular Medicine, published by Cambridge University Press.
A vast resource of credible health and wellbeing information that is produced by the ABC and includes the latest TV and radio reports. The site offers the community access to credible and non-commercial online information on a wide selection of health topics.
General Sites
www.sharelifeaustralia.com - information on organ donation
http://www.esiason.org/about.html
mycysticfibrosis.com
Provides information and personal management charts to track daily health measures for patients - virtual check ups.
"Purple Soup provides challenging activity based programs for children
affected by serious illness and their families. These programs are
designed to rebuild confidence, self esteem, trust and courage, in a
safe, fun and supportive environment."
pwcf.net
A site set up by people with Cystic Fibrosis for people with Cystic Fibrosis. Covers various aspects of living with CF.
cfstudy.com
A high quality site dedicated to the provision of high quality evidence based material for education and study in the field of CF.
Hardin Meta Directory
Provides a list of sites related to CF.
Personal Sites/Support Sites
A great support site with an excellent format.
Genetics
http://www.genet.sickkids.on.ca/cftr/
Genetic Interest Group
(GIG.org.uk): supporting those affected by genetic disorders.
CF Gene Therapy.org.uk
The website of the UK Cystic Fibrosis Gene Therapy Consortium.
Cochrane Cystic Fibrosis and Genetic Disorders Group
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.
GenePool - National Electronic Library for Health
Iinformation on genetic conditions aimed primarily at healthcare professionals who are not genetics specialists, but open to anyone from specialists to patients.
