CYSTIC FIBROSIS USEFUL WEBSITE LINKS

USEFUL LINKS

Advice/Information/Support

http://after16.org.uk/ - After 16 - what's new? A website for teenagers and young people in the UK who have an impairment or disability and are wondering what opportunities there should be when they leave school.

http://www.family-friendly-fun.com - A directory of websites that enhance the quality and enjoyment of family life for people with special needs

http://www.gig.org.uk - Genetic Interest Group. Supporting those affected by genetic disorders.

www.mycysticfibrosis.com - Provides information and personal management charts to track daily health measures for patients - virtual check ups.

http://www.network81.org - A national network of parents working towards properly resourced inclusive education for children with special needs. Information for parents trying to work whilst caring for children with disabilities.

http://www.pwcf.net - A site set up by people with Cystic Fibrosis for people with Cystic Fibrosis. Covers various aspects of living with CF.

http://www.sibs.org.uk - Support and information for people who grow up with a brother or sister with special needs, disability or chronic illness.

http://www.specialneedsfamilyfun.com - This site offers family fun and special needs resources to enhance the fun and quality of family life of CF patients or patients with other disabilities.

http://www.astepforward.co.uk - A Step Forward is a community and informational site which also aims to support and campaign on behalf of disabled people.

http://www.transplantsupportnetwork.org.uk - The Transplant Support Network is a nationwide network of volunteer transplant patients and their carers, providing support, non-medical advice and information for all those coping with transplantation.

http://www.travelhealth.co.uk - Travel insurance advice, with a link to insurance companies for travellers with pre-existing medical conditions.

http://www.cfwristbands.co.uk - A site from where you can purchase CF wrist bands.

Cystic Fibrosis Information

www.cysticfibrosismedicine.com - Excellent site, giving information on the management of CF from a patient and carer perspective.

www.sheffieldthoracic.org.uk - A website of Sheffield's Teaching Hospital's NHS Trust Thoracic Institute

http://cfgenetherapy.org.uk - The website of the UK Cystic Fibrosis Gene Therapy Consortium.

http://www.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.

http://www.liv.ac.uk/cfgd/ - 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.

http://www.creoninfo.co.uk/pages/homepage.asp - Solvay Healthcare's site, concentrating on enzymes and their use in both CF and panceatitis.

http://www.cysticfibrosis.com - Essentially similar to CF Trust website. Good kids section.

http://en.wikipedia.org/wiki/Cystic_fibrosis - medical information about CF

Social

http://www.ceacard.co.uk - The Cinema Exhibitors Association (CEA) card entitles disabled people to visit the cinema with a free ticket for their carer. It is a national scheme accepted in 90% of cinemas in the UK.

http://www.cf-holidayfund.com - Provide financial assistance for UK children and young people with CF up to the age of 25.

http://www.cfdreamholidays.co.uk - A charity formed to give support to families with children suffering from Cystic Fibrosis (CF) by providing them with a stress free, respite holiday.

http://willowfoundation.org.uk/flash.htm - The Willow Foundation is a national charity that funds and organises special days for seriously ill young adults (aged 16-40) throughout the UK, including those with Cystic Fibrosis.

Overseas Sites

http://www.cfww.org - A website for the CF community from around the globe.

http://www.cff.org - cystic fibrosis foundation - An American non-profit organization similar to CF Trust of UK

http://www.cfv.org.au - CF Victoria - provides information on CF, Advocacy, Support and counselling.

http://www.cysticfibrosis.org.au - Australian CF website

http://www.ccff.ca - Canadian CF Foundation

Discussion forums:

CF Trust: http://www.cftrust.org.uk

Leeds: http://www.cysticfibrosismedicine.com

Australia: http://www.cysticfibrosis.org.au

Source: Cystic fibrosis Trust UK and own search

Please feel free to let us know of any other websites which might be of interest to others.