This section is dedicate to all types of European Initiatives that are related to the research on rare diseases.



European Surveillance of Congenital Anomalies

Conceived in 1974, at a Workshop convened by the European Economic Community's Committee on Medicinal and Public Health Research to improve "the methodology of population studies throughout the Community". Congenital anomalies chosen as first topic for concerted action.


EUROCAT (acronym derived from its original name "European Concerted Action on Congenital Anomalies and Twins") established in 1979 by Directorate General XII (Science Research and development) as a prototype for European surveillance aiming to assess the feasibility of pooling data across national boundaries, in terms of standardization of definitions, diagnosis and terminology and confidentiality.

The objectives of EUROCAT are :


  • To provide essential epidemiologic information on congenital anomalies in Europe.
  • To facilitate the early warning of new teratogenic exposures.
  • To evaluate the effectiveness of primary prevention.
  • To assess the impact of developments in prenatal screening.
  • To act as an information and resource center for the population, health professionals and managers regarding clusters or exposures or risk factors of concern.
  • To provide a ready collaborative network and infrastructure for research related to the causes and prevention of congenital anomalies and the treatment and care of affected children.
  • To act as a catalyst for the setting up of registries throughout Europe collecting comparable, standardised data.

E-Rare 2012 - Created by Toussaint Biger