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Useful Links

Useful Resource


Congenital Malformations Browser from the Latin-American collaborative study of congenital malformations (ECLAMC)

The Public Health Genomics Toolkit for Health Needs Assessment in Congenital Disorders

EUROCAT Local Registry Websites

Northern Netherlands



European Birth Cohort

European Collaboration on Craniofacial Anomalies (EUROCRAN)

European Commission

European Commission - Executive Agency for Health & Consumers (EAHC)

European Committions - Rare Diseases Section

European Committee of Experts on Rare Diseases (EUCERD)

European Cytogeneticists Association Register of Unbalanced Chromosome Aberrations (ECARUCA)

European Directory of DNA Diagnostic Laboratories (EDDNAL)

European Network of Rare and Congenital Anaemias (ENERCA)

European Organisation for Rare Diseases (EURORDIS)

European Project for Rare Diseases National Plans Development (EUROPLAN)

European Teratology Society (ETS)

International Birth Defects Information Systems (IBIS)

International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR)

Office for National Statistics (ONS)


Orphanet Journal of Rare Diseases

Rare Diseases Task Force (RDTF)

EUROCAT Member Registry Institute Websites

JRC-EUROCAT Central Registry


Hainaut, Belgium - Scientific Institute of Public Health



Other Congenital Anomaly Registries

British Isles Network of Congenital Anomaly Registers (BINOCAR)


Patient Oriented Websites


Born Healthy


Contact a Family

International Federation for Spina Bifida & Hydrocephalus

March of Dimes

Newlife Foundation for Disabled Children


Public Health Authorities

Centers for Disease Control and Prevention

World Health Organisation (WHO)



WHO Genomic Resource Centre

WHO/CDC/ICBDSR. Birth defects surveillance: a manual for programme managers. Geneva: World Health Organization; 2014. Accessed via


WHO/CDC/ICBDSR. Birth defects surveillance: atlas of selected congenital anomalies. Geneva: World Health Organization; 2014. Accessed via



WHO Collaborating Centres (relevant to Congenital Anomalies)

WHO Collaborating Centre for Drug Statistics Methodology - Norwegian Institute of Public Health

Provides access to a searchable version of the complete ATC index with DDDs