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
Orphanet is a relational database of rare diseases (some 90% caused by genetic factors)and orphan drugs. It contains an encyclopedia on rare diseases and a comprehensive directory of services informing about specialized outpatient clinics, clinical laboratories, resaerch projects, registries, clinical trials and patient organisations from currently 38 countries. All information is freely accessible in five languages.
Information about medical genetics centres in the UK is available on the British Society for Human Genetics website
EMQN - 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.
CEQA- Cytogenetics European Quality Assessment - CEQA's aim is to raise and maintain the quality of Diagnostic Clinical Cytogenetics testing in the EU and the rest of the World through the provision of External Quality Assessment (EQA) schemes, workshops and Best Practice Guidelines.
ERNDIM - ERNDIM's aim is to raise and maintain the performance of Diagnositc Biochemical Genetic testing for Amino Acids, Quantitative Organic Acids, Purines and Pyrimidines, Special Assays in Serum and Urine, Cystine in White Blood Cells and Lysosomal Enzymes. ERNDIM provide World-wide External Quality Assessment (EQA) schemes, training workshops and Best Practice Guidelines.