Internet links for information about genetic disorders and care groups

The internet is an excellent way to find information about genetic disorders and care groups. The links on this page have been ordered into catagory for your ease.
These links were last checked in January 2005, if you find a broken link or would like to include your favourite pages, please contact melissa@gig.org.uk. For other general links please click here.

The Genetic Interest Group's Facebook Page

Please link to this website

We welcome links from other websites, especially sites with information about genetic disorders. See info on linking to GIG.

Academic and Government

Ethics and policy debate

The Media and Public Understanding of Science

Human Genetics

Other Genetic Links

Other useful links

Academic and Government

Advisory Committee on Genetic Testing
The AHRB Research Centre for Studies in Intellectual Property and Technology Law
Association of Medical Research Charities
British Society for Human Genetics
Centre for Education Genetics
Capability - Capacity building for the transfer of genetic knowledge into practice and prevention, funded by the European Union for 3 years from 2007)
Diabetesgenes.org an information resource for professionals and patients on the genetic types of diabetes.
Directorate General III-E 3 at the European Commission pharmaceutical and cosmetic department of the EU. Includes "Rules governing medicinal products in the EU"
Directory of UK Academic Sites
Directory of UK Research Sites
Directory of UK Universities
EQUIP -  NHS website which signposts members of the public to useful health
and social care websites and has a directory of over 4200 support groups and services both national and local to the West Midlands.
European Genetic Alliances' Network
European Commission study of socio-economic research in the life sciences
European Society of Human Genetics
Eurostemcell - European Consortium for stem cell research
Euregene - European Renal Genome Project
Euregene - a kidney tutorial - learn how the kidney works.
Genetic and Rare Diseases Information Center
GenePool - the specialist library for clinical genetics. This site is aimed primarily at health professionals but is open to anyone from specialists to patients.
Genetics, Society and Policy - an open access journal provides an outlet for interdisciplinary research on the social, ethical and legal aspects of genomics
Gene Therapy Advisory Committee
Health EU - Public Health Thematic Portal. Official public health portal of the European Union
HFEA - The Human Fertilisation and Embryology Authority is the UK's independent regulator overseeing the use of gametes and embryos in fertility treatment and research.
Human Genetics Advisory Commission
Human Genetics Commission
Human Genome Project Education Resources
Medline at Healthworks - searchable database of published scientific and medical literature. You can search by keyword (e.g. drug name), author, journal and date.
National Genetics Reference Laboratory
National Human Genome Research Institute - Genetic Education Link Resources
National Office for Public Health Genomics (HuGENet) - Human Genome Epidemiology Network
National Screening Committee - supporting the genetic service network in the UK.
National Electronic Library For Health - Working with NHS Libraries to develop a digital library for NHS staff, patients and the public.
National Metabolic Biochemistry Network (Biomedical Genetics)
contains a list of specialist metabolic tests which are provided in the UK.
Net Doctor - Independant health website
Neuromuscular Network - Treat NMD - A European initatives to ecelerate treatments for neuromuscular disorders.
NHS Direct
NHS Gateway - search accross NHS websites throughout the UK.
Office of Rare Diseases section of the US National Institue of Health. Includes information on rare diseases, patient support group, research and clinical trials, genetics information, news and other information
Royal College of Physicians of London
SAFE - The special Non-invasive Advances in Fetal and Neonatal Evaluation Network
Scottish Stem Cell Network - Brings together scientists, clinicians, business and society to enable advances in stem cell biology
The Department of Health
The Medical Research Council (MRC)
The Roslin Institute - The leading centre for biotechnology.
The Sanger Centre
The Wellcome Trust
The Wellcome Trust Centre for Human Genetics
UK Clinical Molecular Genetics Society
UK Genetics Society
UK Genetic Testing Network (UKGTN)
Yahoo! Medical - Pharmaceutical News - includes latest news stories (mainly business and financial)
The Wellcome Trust - The Human Genome Site

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Ethics and Policy Debate

American Association for the Advancement of Science "Your Genes, Your Choice" describes the Human Genome Project in the USA.
Association of British Insurers
Bioethics section of the Council of Europe Directorate of Legal Affairs
Bioethics Today - A website resource developed by the Universities of Sheffield, Lancaster and Oxford, funded by the Wellcome Trust.
Bioethics Online - The American Journal of Bioethics
Bioethicsweb - A gateway to evaluated internet resources for biomedical ethics run by The Wellcome Trust
Ethox - The Oxford Centre for Ethics and Communication in Health Care, an academic centre which focuses on Research, Education and Training and Clinical Ethics Consultation.
ELSI section of the US National Institutes of Health (NIH) human genome research programme.
ELSI section of the US Department of Energy (DOE) human genome research programme.
ESRC Genomics Policy and Research Forum
Eureth.net - European Information Network - Ethics in Medicine and Biotechnology
European Genetic Alliances' Network
Euroscreen a European collaboration working on the ethical issues surrounding genetic testing and screening
US National Center for Genome Resources
HumGen: International database on legal / social / ethical aspects of human genetics (University of Montreal).
Nuffield Council on Bioethics
Pro-Choice Forum
UK Forum for Genetics and Insurance GIG is a member of the forum.
UNESCO International Bioethics Committee Academic and Government sites (including the NHS).
University of Pennsylvania Center for Bioethics

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Human Genetics

OMNI organising medical networked information
Blazing a Genetic Trail covers the basics of modern molecular genetics
Cancer GeneticsWeb
Clinical Futures : An excellent book published by the BMJ, written by John Bell and its free to read on the Net.
Cochrane Cystic Fibrosis and Genetic Disorders Group - is part of the Cocrane Colloboration, an international network of individuals preparing,maintaining and disseminating systematic reviews of the ffects of healthcare interventions. This particularly sub-griup consists of people interested in producing high quality sytematic reviews of contrrolled clinical in CF and other gentic disorders.
EUREGENETHY / Regulation of Gene Therapy in Europe
Eurogentest Genetic testing in Europe this is a network for test development, harmonization, validation and standardisation in which GIG plays a role.
Fact sheets on genetic mapping, physical mapping and gene cloning and sequencing produced by the US National Human Genome Research Institute
FEDANT - Federation of Antenatal Educators - providing education in the UK for antenatal teachers
GeneCards is an electronic encyclopaedia integrating information about the functions of human genes and their products.
GeneTests contains information relating genetic testing to the diagnosis, management and counselling of individuals and families with genetic disorders.
Genetics Home Reference - A guide to understanding genetic conditions by the US National Library of Medicine
Genetics Virtual Library compiled by the US Department of Energy Human Genome Project
Genetics Webliography compiled by the librarian of the Georgetown University Medical Library
Genetics WWW resources a list compiled by the University of Cambridge Genetics Librarian
Genomicawareness - Created by Michigan Center for Genomic and Public Health
Centre for PreImplantation Genetic Diagnosis - Guy's and St Thomas' Hospital

HealthWeb Genetics compiled by the Taubman Medical Library of the University of Michigan.
Human Genome Project Information - funded by the US department of Energy Office of Science
Links to the Genetic World 1 compiled by the US Department of Energy Human Genome Project
Links to the Genetic World 2 (journals, books and periodicals)
March of Dimes Genetics Site contains information about rare and common genetic diseases
Medical Matrix database of medical information (you will need to sign in)
Medicine Net's excellent medical dictionary
MedWeb guide to biomedical internet resources, compiled by Emory University Health Sciences Center Library
MedWeb Bioethics
MRC Human Genetics Unit
Nuffield Council on Bioethics
OMIM (Online Mendelian Inheritance in Man) : the definitive catalogue of human genes and genetic disorders.
Orphanet Europe wide information resource on rare diseases and orphan drugs, including a directory of support groups.
Primer on Molecular Genetics published by the US Department of Energy in 1997. A good introduction, including a glossary of genetic terms.
Public Health Genetics Unit supported by the University of Cambridge. An excellent resource for information on Human Genetics.
Patient Profiles from Genetech
University of Kansas Genetics Education Centre Includes Human Genome project, education resources, newsletters, glossary, networking.
Webliography for Clinical Geneticists from the American Society of Human Genetics
The Wellcome Trust - The Human Genome Site

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Media and the Public Understanding of Science

British Association for the Advancement of Science 
COPUS ( Public Understanding of Science)
The Dana Centre - purpose built venue, holding events on a range of science based issues.
Genetics Made Easy - A Free informative website on Human Genetics
Genetics Science Learning Center - games, information and educational tools about genetics
Gengage - The Scottish Healthcare Genetics Public engagement network
Glossary of Medical Titles - BMA's Patient Liaison Group (PLG) glossary which includes a brief description of each role, together with an outline of training requirements and details of the relevant regulatory and professional bodies
Sciencewise Grant scheme
Nature
New Scientist
Science Connections
Sense About Science - promoting scientific enquiry free from stigma, intimidation and political pressure.
The Novartis Foundation
The Nuffield Foundation
Psci-com - Part of The Wellcome Trust gateways. Psci-com is a gateway to public engagement with science
The Royal Institution
The Royal Society
The Science Museum
The Wellcome Trust

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Other Genetic Links

Links to numerous patient groups in the UK as well as Internationally.
Health on the Net - Medical information you can trust
Patient information Forum - better communication, better health
Batten Disease Resource - NCL Resource - A gateway for Batten Disease

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