| Resources and Links to other Sites |
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| Genetics Societies |
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see also the International
Federation of Human Genetics Societies
site for details of National Societies
Europe
America Asia Australasia Africa International Societies and Federations Other Genetic Societies
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| Genetics Resources |
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EU Projects Cordis
- An information space for European Research and Development (R&D) and
exploitation of European R&D results 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. 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. 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 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 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 We are pleased to offer
a pdf file of a booklet |
| Genetic Policy Information |
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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.
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| Information primarily for patients and lay users |
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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
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| Genetic services in Europe |
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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 Availability of DNA testing for particular disorders 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.
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| Educational resources |
Genetics education and training guidelinesAmerican Academy of Family Physicians core educational guidelines for medical genetics Courses for genetics professionalsEuropean Genetics Foundation for courses (including medical genetics, cancer genetics, genetic counselling) Resource MaterialAccessible 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
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| Ethical, Legal and Social Implications of human genetics and genomics |
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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
BioethicsWeb, The guide to Internet resources for biomedical
ethics
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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.
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Updated June 17, 2009
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