Resources and Links to other Sites
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Genetics Societies
see also the International Federation of Human Genetics Societies site for details of National Societies

Europe
Please click here for further details

America
American Society of Human Genetics
American College of Medical Genetics
Argentine Society of Medical Genetics
Canadian College of Medical Geneticists
Colombian Association of Human Genetics
Ibero-American Society of Human Genetics of North America

Latin American Network of Human Genetics Societies

Asia
Indian Society of Human Genetics
Hong Kong Society of Medical Genetics
Iranian Society of Human Genetics
Japan Society of Human Genetics

Australasia
Human Genetics Society of Australasia

Africa
Southern African Society for Human Genetics

International Societies and Federations
International Federation of Human Genetics Societies

International Genetic Epidemiology Society
HUGO - the Human Genome Organisation
International Behavioural and Neural Genetics Society, promotes neurobehavioural genetics and excellence in research on behavioural and neural genetics

World Health Organisation Human Genetics Programme

Other Genetic Societies
European Cytogenetics Association
Human Genome Variation Society
International Genetic Alliance

International Society for Forensic Genetics


 

Genetics Resources

EU Projects

Cordis - An information space for European Research and Development (R&D) and exploitation of European R&D results
Cordis FP 6 - Coordination of Research Activities
Cordis FP 7 - The Seventh Framework Programme (FP7) bundles all research-related EU initiatives together under a common roof. The broad objectives of FP7 have been grouped into four categories: Cooperation, Ideas, People and Capacities. For each type of objective, there is a specific programme corresponding to the main areas of EU research policy. All specific programmes work together to promote and encourage the creation of European poles of (scientific) excellence. Find a call
Cordis FP 7 Library

Eurogentest - EuroGentest is 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.
Find a lab or a test
Eurogentest News

Life Science Competence in Europe - The Life Competence database is an online network and knowledge sharing contact system filled with EU research projects in healthcare biotechnology that have been funded by the EU Commission under FP6.

Newsletter of the European Commission Scientific Committees


Call for comments to the guidelines for clinical protocols in genetic research prepared as a guide for the ethical committees and researchers.
Click here to send comments via a feedback form.

European Biotechnology Network The European Biotechnology Network is dedicated to facilitating co-operation between professionals in biotechnology and the life sciences all over Europe.

EuroGenGuide Information about genetic testing, counselling and research across Europe.

European Molecular Genetics Quality Network - EMQN's aim is to raise and maintain the standards of Diagnostic Clinical Molecular Genetics Testing in the EU through the provision of standard External Quality Assessment (EQA) schemes and agreed Best Practice protocols. 

OMIM - Online Mendelian Inheritance in Man®. OMIM is a comprehensive, authoritative, and timely compendium of human genes and genetic phenotypes

Orphanet - a database of rare diseases (90% caused by genetic factors) and orphan drugs. It includes peer reviewed information on these diseases both in French and in English, a directory of current services for France,  but which will be extended to the rest of Europe within the coming months
Orphanet News

Risk Communication Aid A new free web tutorial for communicating risk in prenatal diagnosis to patients

Decipher - DatabasE of Chromosomal Imbalance and Phenotype in Humans using Ensembl Resources.

EuroBioBank, a European network of DNA, cell and tissue banks for rare diseases.

European Collection of Cell Cultures (ECACC)

The National Disease Research Interchange - Advancing the procurement, preservation and distribution of human cells, tissues and organs for research and transplant.

IMPACT Study
Identification of Men with a genetic predisposition to Prostate Cancer: Targeted screening in BRCA1 and BRCA2 mutation carriers and controls

The Public Population Project in Genomics (P3G) is a non-for-profit international consortium to promote collaboration between researchers in the field of population genomics.

DRIVER - Digital Repository Infrastructure Vision for European Research

National Center for Biotechnology Information at the NIH in the USA

On-Line Mendelian Inheritance in Man (OMIM)

IMGT, international ImMunoGeneTics database, an integrated database specialising in immunoglobulins (Ig), T cell receptors and MHC molecules of all vertebrate species. 

Familial cancer database, a diagnostic aid in hereditary cancer

Small supernumerarymarker chromosomes. Collects all available case reports on small supernumerary marker chromosomes (sSMC) and defines critical regions for partial trisomies due to the presence of sSMC.

"WORK IN PROGRESS!" - a personal account
Jorge Sequeiros' Blog


We are pleased to offer a pdf file of a booklet

Genetics: Basis for Medicine in the 21st Century. An introduction to genes, diseases and genetic tests.  

This 61 page booklet is written by Dr Achim Regenauer and Professor Dr Jörg Schmidtke and published by Munich Re. 


 

Genetic Policy Information
The HumGen site from the Centre for Public Law Research at the University of Montreal aims to provide information on a wide range of legislation, policy, guidelines and recommendations of government and non-government organisations worldwide.
 

 

Information primarily for patients and lay users

EGAN - European Genetic Alliances' Network is working for a voice in research and health policy and seeks a world in which genetic diseases are understood, effectively treated, prevented and the people affected supported, and is an alliance of national genetic alliances and European disease specific patient groups with a special interest in genetics, genomics and biotechnology.

Genetic Interest Group an umbrella group of Patient Support Groups

UK Contact a Family Allows families with genetic disorders to contact others

Genetic Alliance ((US) formerly the Alliance of Genetic Support Groups

Alopecia Areata Online Support Group a community of patients, family members and friends dedicated to dealing with Alopecia Areata.

Your Genes, Your Choices: Exploring the Issues Raised by Genetic Research - describes the Human Genome Project, the science behind it, and the ethical, legal, and social issues that it raises. Recommended.

Learn more about genetics. An introduction to genetics, inheritance and genetic disease produced by the UK Genetic Interest Group

 

Genetic services in Europe

A snapshot of the organisation of genetic services was provided in a special supplement of the European Journal of Human Genetics 5(suppl 2)1-220 1997

Clinical services
Information about medical genetics centres in the UK is available on the British Society for Human Genetics website

Availability of DNA testing for particular disorders
Please visit the European Directory of DNA laboratories

European Molecular Genetics Quality Network - EMQN's aim is to raise and maintain the standards of Diagnostic Clinical Molecular Genetics Testing in the EU through the provision of standard External Quality Assessment (EQA) schemes and agreed Best Practice protocols. 
 

 

Educational resources

Genetics education and training guidelines

American Society of Human Genetics Information and Education Committee: medical school core curriculum in genetics

American Academy of Family Physicians core educational guidelines for medical genetics

Courses for genetics professionals

European Genetics Foundation for courses (including medical genetics, cancer genetics, genetic counselling)

Resource Material 

Accessible Publishing of Genetic Information (APoGI). So far this project based at London University offers excellent professional and patient information sheets about haemoglobin disorders.

Genomes 3 by Terry Brown

University of Kansas's excellent Genetics educational resources page

MendelWeb - general genetics information

Webliography for Clinical Geneticists

GeneCards - give overviews of human genes, their products, and the diseases in which they are involved.

Clinical Genetics: A Self Study for Health Care Providers - covers identifying individuals and families who might benefit from genetic services, assisting them in accessing these services, and answering questions they might have following a genetic consultation.

GeneClinics  GeneClinics - contains genetics disease database and information relating genetic testing to diagnosis, management, and counselling of individuals and families with inherited disorders
 

 

Ethical, Legal and Social Implications of human genetics and genomics

Bioethics section of the Council of Europe Directorate of Legal Affairs

European Database on Bioethics, supported by the European Commission and coordinated by France, Germany, Netherlands and Sweden

Euroscreen, a European collaboration on the ethical issues surrounding genetic testing and screening

Nuffield Council on Bioethics

BioethicsWeb, The guide to Internet resources for biomedical ethics
 

 

Dislaimer

The European Society of Human Genetics (ESHG) is a distributor and not a publisher of content supplied by third parties. Accordingly, the ESHG does not have editorial control over such content supplied by third parties. Any opinions, advice, statements, services, offers, or other information or content expressed or made available by third parties, are those of the third party and not the ESHG. Neither the ESHG nor any third-party provider of information, services, or any combination thereof guarantees the accuracy, completeness, or usefulness of any content, nor its merchantability or fitness for any particular purpose.

The ESHG neither endorses nor is responsible for the accuracy or reliability of any opinion, advice, or statement provided by a third party. Under no circumstances will the ESHG be liable for any loss or damage suffered by an individual or entity that relies upon information provided by a third party and obtained through the ESHG's website. It is the responsibility of the individual or entity to evaluate the accuracy, completeness or usefulness of any information, opinion, advice or other content available through the ESHG website. Please seek the advice of professionals, as appropriate, regarding the evaluation of any specific information, opinion, advice or other content provided by third parties.

Updated June 17, 2009

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