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.