The Group has selected and organised links to resources available via the Internet. The links detailed here may be of interest to members of the public, consumers, new reviewers as well as long-standing collaborators. Some URLs may be used more than once on this page.
If you have any suggestions for links that should be added here, please email your recommendations to Tracey Remmington or Nikki Jahnke.
General information on genetic disorders
Genetic Interest Group
Jeans for Genes
The Globin Gene Server
The Association of Genetic Support of Australasia
The European Society of Gene Therapy
Cystic Fibrosis
National Associations
UK CF Trust
CF Foundation
Canadian CF Foundation
CF Australia
Cystic Fibrosis Association of Ireland
Medical
European Cystic Fibrosis Society
The British Thoracic Society
Thoracic Society of Australia & New Zealand
CF Gene Therapy Consortium
Cystic Fibrosis Medicine
Cystic Fibrosis Research
UK Cystic Fibrosis Database
CFUnite
Consumer
US Adult CF Association
Pennsylvania Cystic Fibrosis Inc.
The Butterfly Trust
The Reaching Out Foundation
CF Parents
Cystic Fibrosis Worldwide
CF Center Stanford
Cystic Fibrosis.com
healingwell.com
Sickle Cell Disease & Thalassaemia
Sickle Cell Society
The Sickle Cell Information Centre
The Red Blood Cell
American Sickle Cell Anemia Association
Sickle Cell Foundation Nigeria
About Sickle Cell Disease
Unit for the Social Study of Thalassaemia and Sickle Cell Disease
Center for Sickle Cell and Thalassemic Disorders
Brent Sickle Cell and Thalassemic Centre
Thalassaemia Patients and Friends
Thalassaemia Australia
Haemophilia
The World Federation of Hemophilia
The Haemophilia Society
The British Committee for Standards in Haematology
National Hemophilia Foundation
Dutch Association of Hemophilia Patients
Association of Hemophilia Clinic Directors of Canada
Federazione delle associazioni emofilici onlus (Italian)
Other Genetic Disorders
Society for the Study of Inborn Errors of Metabolism
British Inherited Metabolic Disease Group
Children Living with Inherited Metabolic Diseases
National PKU News
Research Partners
Division of Child Health
Evidence-Based Child Health Unit, Alder Hey Children's Foundation Trust
National Electronic Library for Health
The Royal College of Paediatricians and Child Health
The British Paediatric Respiratory Society
European Society for Paediatric Research
Medicines for Children Research Network
The James Lind Alliance
National Organisation for Rare Diseases