Web Links

Below is a list of web links to health, genetics, education and other useful sites that are currently online. Click on any link to be taken to that website.

Antenatal screening and the newborn

Answer (Antenatal screening web resource) - Information about some of the conditions that might be detected by antenatal tests, including personal testimonies from people affected by them
ARC - antenatal results and choices - Provides non-directive support and information to parents throughout the antenatal testing process.
Continuous Professional Development (CPD) Resources to support the Antenatal and Newborn Screening Programmes - A one stop site where you can access all the cross-cutting education and training resources developed by the NSC in relation to the antenatal and newborn screening programmes.
DIPEx.org - Personal experiences of antenatal screening, including decision making after a prenatal diagnosis
Fetal Anomaly Screening Programme (FASP) - Relating to current practice in England, this website is for all users of maternity services and health professionals involved in maternity care.
Fetal Medicine - Website of London Fetal Medicine Centre and Fetal Medicine Foundation
March of Dimes - U.S non-profit organization for pregnancy and newborn health: dedicated to improving the health of babies by preventing birth defects, premature birth and infant mortality.
NNSGRC - National Newborn Screening & Genetics Resource Centre - Links to wide variety of resources(US website)
Osteogenesis Imperfecta Foundation - OI Issues: pregnancy considerations for women with OI
Professional Education for Genetic Assessment and Screening - PEGASUS online is for health professionals involved in antenatal and newborn screening.
Reproductive Genetics Institute -
UK Newborn Screening Programme Centre - antenatal and newborn screening programmes
UK Screening Portal - the gateway to information on screening in the UK
Wolfson Institute - Provides private integrated, combined and quadruple screening tests and downloadable leaflets about these tests

Cancer

Cancer rehabilitation - Exercise based cancer rehabilitation
Cancer Research UK - UK charity dedicated to cancer research
Inside cancer - Multimedia guide to cancer biology
MACGN (Mid-atlantic cancer genetics network) - Centre specialising in heredity cancer: breast, ovarian, colorectal and prostate cancer.
Macmillan Cancer Support - Leading cancer charity
OPERA - Genetic breast/ovarian cancer risk assessment tool
Understanding Cancer series: Gene Testing - illustrates what genes are, explains how mutations occur and are identified within genes, and discusses the benefits and limitations of gene testing for cancer and other disorders.

Ethics

bioethics.net - The American Journal of Bioethics
Bionet - Created by 8 European science centres and museums, you may
gen.ethix - An online Flash game about decision making on ethical issues stemming from advances in biotechnology and molecular medicne.
Genethics Club - The Genethics Club is a national forum for the discussion, by health professionals, of practical ethical problems encountered in the working lives of clinical genetics departments in the United Kingdom.
Genethics.ca - A wide list of resources on many aspects of genetics and ethics.

Family History and Genealogy

Progeny - Pedigree drawing tool
Surgeon General's Family History Initiative - U.S. Department of Health and Human Services initiative aimed at encouraging all American families to learn more about their family health history

Genetics - General

Blazing a Genetic Trail - Highly accessible genetics information and background from Howard Hughes Medical Institue.
Classic Papers in Genetics - Links to some of the most important papers in the history of genetics research.
DNA from the beginning - An animated primer on the basics of DNA, genes and heredity
DNA interactives - Is an interactive Web site describing DNA and its structure and function, the scientific history of its discovery, and its development into a tool used in biology, technology, and medicine.
Generation Scotland - The main focus of Generation Scotland is on health and illness factors that are passed on in families. These inherited factors, or genes, influence our risk of being affected by a number of common causes of ill health.
OMIM - Online Mendelian Inheritance in Man - This database is a catalog of human genes and genetic disorders and is intended for use primarily by physicians and other professionals concerned with genetic disorders, by genetics researchers, and by advanced students in science and medicine.
The New Genetics - This 90-page educational booklet from the National Institute for General Medical Sciences explains how genes influence health and disease and more.
Top 50 Genetics Blogs - A list of links to genetics-related blogs world-wide, produced by USPharmD+.
Your genes, your choices - Booklet which presents hypothetical situations, then explains the background science.

Genetics Centres and Services

Genetics Education

Access Excellence - A national educational program for high school biology teachers sponsored by Genentech, Inc. Includes Genetics Websites and Graphics Gallery.
DNA Interactive (DNAi) - Developments in genetics and human genome project illustrated through animations
Dolan DNA Learning Center - Provides a wide range of genetic education resources to enhance education for a broad audience.
European Science Education Media (EUSEM) - Presents multimedia content on public funded European research in the areas of Health, Genomics and Food Safety.
FBR Chances Choices - Using a series of connected scenes, this unit follows various members of the Chance family as they discover and deal with a variety of risks to their genetic health.
Gene Almanac (Dolan DNA Learning Center) - Includes a variety of instructional materials and information on educational programs offered by Cold Spring Harbor Laboratory for both students and teachers.
Genetics Education Center (University of Kansas Medical Center) - Covers the Human Genome Project, careers in genetics, and offers a wide variety of links to other resources, including lesson plans.
Genetics made easy - Genes, chromosomes, the environment, the family and you....
GENIE - Virtual Genetics Education Centre - The virtual genetics education centre is an expanding collection of evaluated resources for teaching and learning in genetics. Now with easier links to resources specifically for health professionals and including a new genetics glossary.
Human Genome Project - This site is the official U.S. government site of the Human genome Project. It provides information on the project and has links to various other related sites.
Learn Genetics: Genetic Science Learning Centre - Home site of University of Utah Department of Genetics. Many resouces for teachers and students.
MendelWeb - MendelWeb is an educational resource for teachers and students interested in the origins of classical genetics.
NCHPEG - National Coalition for Health Professional Education in Genetics - U.S. site. NCHPEG is comitted to health professional education in genetics. NCHPEG works to integrate genetics content into the knowledge base of health professionals and students by developing educational and information resources.
Scitable - A free science library and personal learning tool brought to you by Nature Publishing Group. Provides a collaborative learning space for science undergraduates.
Telling Stories - This resource has been developed to illustrate the impact and utility of genetics on real life health care and to help practitioners gain more understanding of genetics in professional practice.

Genetics Education for Schools

Bioethics Education Project (BEEP) - The BioEthics Education Project information, activities, resources and discussion forums for a wide range of bioethical topics.
Top Marks! Educational Search Engine - Quickly find the best teaching resources, homework help.

Genetics in Health Care Practice

DMD Registry - The DMD Registry provides a national DMD database for clinicians, health professionals and researchers to help accelerate the development and delivery of new treatments for Duchenne and Becker Muscular Dystrophy.
Gene Clinics - Medical genetics knowledge base. NIH funded, expert-authored descriptions of inherited disorders. Covers genetic testing in diagnosis and management.
GeneSense - GeneSense uses a life cycle approach to investigate the issues of genetics in healthcare practice. These issues are illustrated utilising a number of case studies for each identified life stage.
Nowgen - A Centre for Genetics in Healthcare - Nowgen is a centre of expertise in genetics in healthcare, which sets out to inform and improve the practice of genetic medicine
UK National Screening Committee - The UK National Screening Committee is chaired by the Chief Medical Officer for Scotland and advises Ministers and the NHS in all four UK countries about all aspects of screening policy and supports implementation.
Wales Gene Park - The Wales Gene Park is an exciting and ambitious venture that brings together genetics, life sciences and clinical expertise from across Wales.

Genetics in the News

BBC health news - genetics - links to relevant genetics stories on the BBC health information website
Behind the headlines - Your guide to the science that makes the news. NHS website.
BioNews - UK site - supported by Department of Health and Wellcome Trust
PHGF News Page - Foundation for Genomics and Population Health

Human Genome

genome.gov - National Human Genome Research Institute - Educational materials about genetics and genomics for students, teachers and the general public.
GNN's Genome Glossary - Glossary which decodes genomics jargon.
Human Genome Project Education Resources - Many links; U.S site.
Human Genome Project Information - has many education resources
inside dna: a Genomic Revolution - Inside DNA was developed by At-Bristol on behalf of Ecsite-uk, with funding from the Wellcome Trust and support from the Sanger Institute. Provides project and tutorial information, teaching materials and links to other resources.
National Office of Public Health Genomics - U.S.site. Public Health Genomics is an emerging field that assesses the impact of genes and their interaction with behavior, diet and the environment on population health.

Initial listing

CaF - Contact a Family - Information, support and advice for families with a child with any disability or special need, including expectant parents with a prenatal diagnosis. Includes information about a wide range of conditions.
Centre for Genetics Education, Sydney, Australia - Provides current and relevant genetics information to individuals and family members affected by genetic conditions and the professionals who work with them.
Learn.Genetics - Genetics Science Learning Centre
National Genetics Education and Development Centre - Works with a range of groups throughout the UK to facilitate the integration of genetics education into all levels of education and training for all NHS health professionals.

Laboratory Genetics

EDDNAL - European Directory of DNA diagnostic laboratories
European Society of Gene and Cell Therapy - a society dedicated to the development of gene therapy, cell therapy and genetic vaccines

Medical Information on the Internet

Patient Information - General

Contact a Family - Information, support and advice for families with a child with any disability or special need, including expectant parents with a prenatal diagnosis. Includes information about a wide range of conditions.
Genetic Alliance UK - Genetic Alliance UK is a national charity of over 130 patient organisations, supporting all those affected by genetic conditions.
Patient UK: patient support - genetic syndromes - Over 120 links to support groups, societies and self help groups.
Unique - rare chromosome disorder support group - Unique is a source of information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them.

Patient Information - Support Groups and Charities

Breakthrough Breast Cancer - Charity committed to fighting breast cancer through research, campaigning and education
CLIMB - National Information and Advice Centre for Metabolic Diseases - Information and support on all metabolic diseases to children, adults, families, carers and professionals.
Cystic Fibrosis Trust - Provides information, advice and support on all aspects of cystic fibrosis.
Downs Heart Group - Support and information relating to heart conditions associated with Downs syndrome
Downs Syndrome Association - Helping people with Downs Syndrome to live full and rewarding lives.
Downs Syndrome Scotland - Information about the condition, with advice and guidance for individuals affected, their families and carers. Includes information about publications.
Fragile X Society - We are the UK registered charity providing support, information and friendship to families whose children and relatives have fragile X syndrome. Also provides information to professionals.
Huntington's Disease Association - Supporting people affected by the disease and to providing information and advice to professionals
Klinefelters Synrome Association UK - Information and support around Klinefelters Syndrome
Marfan Association UK -
Marfan Trust - Information about Marfan Syndrome and current research.
Muscular Dystrophy Campaign - The Muscular Dystrophy Campaign is the only UK charity focusing on all muscular dystrophies and allied disorders. We have pioneered the search for treatments and cures for over 45 years.
National Osteoporosis Society - The National Osteoporosis Society is the only national charity dedicated to improving the prevention, diagnosis, and treatment of this fragile bone disease.
Psoriasis Scotland Arthritis Link Volunteers - Scotland's first ever psoriasis charity
Rare Disease UK - The National Alliance for people with rare diseases and all who support them.
Restricted Growth Association - Information and support for people with restricted growth conditions and their families.
Scottish Huntington's Association - Offers support and practical help to the person with Huntington's Disease and their carers who are often families.
Sickle Cell Society - Information, advice and support on Sickle Cell disorders.
SOFT UK - Support for families affected by Pataus Syndrome (trisomy 13), Edwards Syndrome (trisomy 18), and related disorders.
Tuberous Sclerosis Association - Welcome to the Web site of the Tuberous Sclerosis Association, the UK charity that supports sufferers, promotes awareness, and seeks the causes and best possible management of Tuberous Sclerosis (TSC).
Turner Syndrome Support Society - The Society provides accurate and up to date information on Turner Syndrome and the many aspects of living with the condition on a daily basis.
UK Thalassaemia Society - Information and support on thalassaemia.

Professional Groups and Societies

American Society of Human Genetics - For those with a special interest in human genetics.
British Society for Human Genetics - BSHG is an independent body representing UK human genetics professionals.
Clinical Genetics Society - The Clinical Genetics Society (CGS) was set up in 1970 to bring together doctors and other professionals involved in the care of individuals and families with genetic disorders.
Clinical Molecular Genetics Society - Main aim of the CMGS is to advance the science of clinical molecular genetics and to further public education.
Cochrane Cystic Fibrosis & Genetic Disorders Review 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.
ESRC Genomics Policy and Research Forum - Linking social science research with genomic science and technology and connecting research with policy makers, business, media and society.
Eurogene - Portal of the European Genetics Foundation
EuroGentest - An EU-funded Network of Excellence (NoE) with 5 Units looking at all aspects of genetic testing - Quality Management, Information Databases, Public Health, New Technologies and Education.
European Organisation for rare Diseases (EURORDIS) - EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe.
European Society of Human Genetics - Promoting research in basic and applied human and medical genetics
Gengage - Scottish Healthcare Genetics Public Engagement Network
Human Genetics Commission - UK government's advisory body on new developments in human genetics.
National Society of Genetics Counselors - (U.S. site)
PHG Foundation - ( Foundation for genomics and population health) - International charity working to achieve evidence based application of biomedical science for health
Primary Care Genetics Society - A new organisation which aims to support and facilitate the educational needs of PCPs to help translate the continuing advances in clinical genetics into practice.
UK Genetic Testing Network - The UK Genetic Testing Network aims to ensure the provision of high quality equitable genetic testing services and includes genetic testing laboratories, clinicians and commissioners of NHS genetic services and involves patient support groups.

Resources

BUBL (Bulletin Board for Libraries): Genetics Education - Catalogue of internet resources from Strathclyde University
GROW - Genetics Resources on the Web - Information related to human genetics for health professionals and the public, with high quality information related to human genetics, with a particular focus on genetic medicine and health.
Intute: Health and Life Sciences - A free online service providing access to the very best web resources for education and research.