Website Links
The Cystic Fibrosis Trust is not responsible for the content of external websites.
If you find a broken link, please let us know and we will update as soon as possible.
Advice / Information / Support
Adviceguide.org.uk
If you need information and can't get to a Citizen's Advice Bureau, just go to adviceguide. It covers everything from housing, debt and the legal system to tax, benefits, family matters and consumer rights.
Barts and the London Children's Hospital
Excellent website giving reassurance and advice for children going into hospital. Features a young girl with Cystic Fibrosis.
cysticfibrosismedicine.com
Excellent site, giving information on the management of CF from a patient and carer perspective.
CitizenCard
Official ID and proof-of-age for anyone resident in Britain or Ireland.
Citizen's Advice Bureau
For independent advice on your rights, including benefits information and help filling in Disability Living Allowance forms.
Community Legal Advice
Free, confidential and independent legal advice for residents of England and Wales.
Connexions Direct
This provides advice and information for young people aged 13-19.
dh.gov.uk
Department of Health website.
Directgov
Public services all in one place.
Genetic Alliance UK
Supporting those affected by genetic disorders. Previously called the Genetic Interest Group.
Expert advice on Cystic Fibrosis in English, Czech, Dutch, German, Lithuanian, Polish and Romanian (further languages projected).
Foreign and Commonwealth Office
The FCO provide advice and information for British Nationals travelling and working abroad.
Heartlands CF
This is a website designed especially for everyone involved with the Adult Cystic Fibrosis Centre at Heartlands Hospital in Birmingham.
Home-Start
Home-Start is a charity that provides support to families with young children in local communities across the UK.
How to become an organ donor
The organ donor registration pages on UKTransplant.org.uk
Independent Panel for Special Education Advice
Free and independent legal advice and support.
Network 81
A national network of parents working towards properly resourced inclusive education for children with special needs.
Parents at Work.org.uk
Information for parents trying to work whilst caring for children with disabilities.
pwcf.net
A site set up by people with Cystic Fibrosis for people with Cystic Fibrosis. Covers various aspects of living with CF.
Radar.org.uk
RADAR's vision is of a society where human difference is routinely anticipated, expertly accommodated and positively celebrated.
sibs.org.uk
Support and information for people who grow up with a brother or sister with special needs, disability, chronic illness.
The Transplant Support Network
The TSN is a nationwide network of volunteer transplant patients and their carers, providing support, non-medical advice and information for all those coping with transplantation.
TravelHealth.co.uk
Travel insurance advice, with a link to insurance companies for travellers with pre-existing medical conditions
Youth Health Talk
Information and stories about medical issues told by young people affected. Includes some young people talking about Cystic Fibrosis.
Cystc Fibrosis Information
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.
Medical Information
Association of Medical Research Charities
Website of the AMRC (of which we are a member) giving information about medical research.
AntenatalTesting.info
Comprehensive information about antenatal screeining.
Aspergillus.org.uk
A website devoted to all aspects of Aspergillus, including medical and scientific sections.
British Lung Foundation
The website of the organisation working for those affected by lung disease. Contains information on a wide variety of lung conditions.
Children First
A website with health information designed specifically for children and families.
Children's Liver Disease Foundation
Website for Children''s Liver Disease Foundation, with information, support networks and useful contacts
Diabetes UK
Website for the UK's leading charity for people with diabetes.
Gene Therapy Net
Website giving general information about gene therapy research.
The Human Fertilisation and Embryology Authority
A non-departmental Government body that regulates and inspects all UK clinics providing IVF, donor insemination or the storage of eggs, sperm or embryos.
Infertility Network UK
Advice, support and understanding for those with fertility problems.
nhsDirect.nhs.uk
National Health Service website.
Sense about Science
Website giving information about how research is conducted, research in the media and debunking a few myths.
UKTransplant.org.uk
NHS UK Transplant saves lives through organ donation and transplantation. It is a Special Health Authority providing a 24-hour service for the matching and allocation of donated organs throughout the UK.
Social
CEA Card
The Cinema Exhibitors Association 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.
Cystic Fibrosis Holiday Fund
Provide financial assistance for UK children and young people with CF up to the age of 25.
Holiday Care
Holiday and Travel Information Service
The HoneyRose Foundation
The HoneyRose Foundation is a registered charity dedicated to raising money and organising special days for terminally ill people above 40 years old, including those with Cystic Fibrosis.
Rays of Sunshine
This is an organisation very similar to the Willow Foundation. Their special days are for seriously ill youngsters aged 3 to 18 throughout the UK. Turning wishes into happy memories.
Starlight Children's Foundation
Starlight helps terminally ill children aged 4 to 18, including those with CF, by granting them a magical wish and by creating entertainment in hospitals and hospices.
Willow Foundation
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.
World Travel Guide
Online travel guides including healthcare information about any country or region; especially useful for those doing gap years.
Overseas Sites
Medicalert.org.uk
Provides life saving identification systems.
CF Foundation
Excellent and informative site of the US Cystic Fibrosis Foundation.
CF Worldwide
Excellent site for the CF community from around the globe.
CF Voice
A US website sponsored by a pharmaceutical company with personal stories of people with CF and sections for different age groups.
