European policy on rare diseases

A description of European policy in relation to rare diseases can be found on the website of the European Commission.

The European response can best be characterised by a combination of key elements:

  • promoting the development of national rare diseases plans and strategies
  • setting up and supporting European Reference Networks (ERNs)
  • supporting the definition, codification and inventory of rare diseases
  • supporting the designation and authorisation of orphan medicinal products
  • building and broadening the knowledge base also through research
  • empowering patient organisations.

Sciensano is involved in a number of ongoing and new EU projects that will be launched soon in the field of rare diseases. Some examples:

  • The Orphanet Data for Rare Disease project (OD4RD). More information on the European OD4RD project website.
  • The European Joint Programme on Rare Diseases (EJP RD). More information on the European EJP RD project website.
  • The Joint Action JARDIN (Joint Action on integration of ERNs into national healthcare systems): start of the project on 01/02/2024.

Sciensano is responsible for several aspects included in the Belgian plan for Rare Diseases such as keeping the Orphanet database for Belgium up-to-date and processing the data from the Central Registry of Rare Diseases. This registry aims to centralise specific data on all Belgian patients affected by a rare disease. The Belgian Genetic Test Registry has been created which functions as an inventory of genetic tests available in Belgium to increase the quality management in the Centres for Human Genetics. Sciensano also hosts several disease-specific registries.

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