The EUCERD held three meetings per year at the European Commission in Luxembourg.

In addition, members regularly took part in workshops and conference calls on specific topics, notably the following areas of work supported by the EUCERD Joint Action:

  • Implementation of plans and strategies for rare diseases at national level (read more),
  • Standardisation of rare disease nomenclature at international level (read more),
  • Mapping the provision of specialised social services and integration of rare diseases into mainstream social policies and services (read more),
  • Leveraging of the value of EU networking for improving the quality of care for rare diseases (read more),
  • Integration of RD initiatives across thematic areas and across Member States (read more),

Other areas of work of the EUCERD included: patient registries, indicators, the clinical-added value of orphan medicinal products, genetic testing, and new born screening.