Internet links for information about genetic disorders and care groups
Links to Academic and Government genetic websites
Links to Ethics and Policy Debate genetic websites
Links to the Media and Public understanding of science
Links to Human Genetics websites
Other Genetics Links
Academic and Government
- Advisory Committee on Genetic Testing
- The AHRB Research Cen
tre 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 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 Medicines Agency
- 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.
- Expanded Newborn Screening - The expanded screening website contains information about the pilot expansion of the newborn bloodspot screening programme to include a further five rare inherited metabolic conditions (GA1, HCU, IVA, LCHADD & MSUD) and contains information about these conditions.
- FANS - FANS is a managed clinical network hosted by NHS Tayside, and created to improve healthcare services for familial arrhythmia patients, their families and carers.
- 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
- Human Genetics Commission
- Human Genome Project Education Resources
- Human Tissue Authority - licenses and inspects organisations that store and use human tissue for purposes such as research, patient treatment, post-mortem examination, teaching and public exhibitions.
- Managed Clinical Networks in Scotland - the Scottish NHS has a range of managed clinical networks, groups of clinicians, healthcare professionals, NHS managers and patients that work together to improve the quality of clinical services for patients with experience of a particular illness.
- 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 Voices - National Voices is the coalition of health and social care charities. They work together to strengthen the voice of patients, service users, carers, their families and the voluntary organisations that work for them.
- NHS Evidence - Health Information Resources, formally the National Library for Health
- 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 fetal anomaly Screening Programme - patient information leaflets.
- NHS Direct
- NHS Choices - search accross NHS websites throughout the UK.
- Office of Rare Diseases section of the US National Institute of Health. Includes information on rare diseases, patient support group, research and clinical trials, genetics information, news and other information
- PHGEN II - Public Health Genomics a European Network.
- Royal College of Physicians of London
- Scottish Stem Cell Network - Brings together scientists, clinicians, business and society to enable advances in stem cell biology
- Talking Genetics - raising awareness of genetic conditions in ethnic minority communities. A source of information for those in consanguineous relationships.
- Telling Stories - Understanding Real Life Genetics a resource hosted by the NHS National Genetics Education and Development Centre
- 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)
- The Wellcome Trust - The Human Genome Site
Ethics & Policy Debate
Media and the Public Understanding of Science
- 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 Genetic Alliance UK plays a role.
- Expanded Screening - The expanded screening website contains information about the pilot expansion of the newborn bloodspot screening programme to include a further five rare inherited metabolic conditions (GA1, HCU, IVA, LCHADD & MSUD) and contains information about these conditions.
- Fact sheets on genetic mapping, physical mapping and gene cloning and sequencing produced by the US National Human Genome Research Institute
- The Family History of Bowel Cancer Clinic - an NHS service for those families affected by bowel cancer
- FEDANT - Federation of Antenatal Educators - providing education in the UK for antenatal teachers
- 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
- 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
- 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
- The Wellcome Trust - The Human Genome Site
- Clincal Trials - A website that has been supported by us that offers advice from patients with experience of clinical trials to those who are looking to get involved.
- Health on the Net - Medical information you can trust
- Haemophilia Care - an information resource and advice for the haemophilia community.
- Patient information Forum - better communication, better health
- Batten Disease Resource - NCL Resource - A gateway for Batten Disease
- Shooting Star Children's Hospice - Shooting Star offers a range of care services for children and young people with life-limiting conditions and their families, in the community and at Shooting Star House, the purpose-built facility based in Hampton, Middlesex.
- RareShare - a website dedicated which is building communities online for rare conditions
- Endobible: This website is designed for health professionals although the information provided on the site is also useful for patients. It provides a useful resource for those who treat and live with genetic conditions which affect hormones.
- Medlaw: This website offers useful legal advice on health issues. The information is meant to inform patients and act as starting point so that patients can pursue legal paths if they feel that their level of care isn't as it should be. It is worth noting that it is a guidance document only and shouldn't be used instead of legal representation.