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European or international federations for rare diseases

Find the federation for your rare disease

A Federation is a network of national patient organisations for a specific rare disease.

International federations can also be members of Rare Diseases International.

Council of European Rare Disease Federations (CEF)

The Council of European Rare Disease Federations provides a platform for the exchange of experiences and
information across federations working for different diseases or group of diseases.
The Council enables European and international RD Federations:

  • to share information and experience relevant to activities and issues they have in common across their
  • specific rare diseases at the European level,
  • to discuss and implement common activities within EURORDIS,
  • to enhance or build their capacities as European Federations gathering patient groups from different
  • countries for their specific disease or group of diseases,
  • to foster their voice at the European level for their respective diseases,

in order to –directly or indirectly- fight against the impact on the lives of people living with the rare diseases these European federations are specifically addressing.

CEF Resources

Access here.

CEF workshops presentations and documents

For CEF Members only, these documents are password protected. Please contact for more information


The EURORDIS Programme of Support to European Rare Disease Federations

The aim of the EURORDIS Programme of Support to European Rare Disease Federations is to promote patient empowerment through capacity building and European networking between patient organisation representatives in disease-specific areas. The Programme also aims to enhance dialogue between these patient organisations representatives and clinicians or academic European leaders in their area.

The Programme provides small, quick and flexible financial support for the organization or participation in European meetings, training sessions, project development, workshops and conferences. All European Rare Disease Federations that are full members of EURORDIS can apply for this support.

The programme is designed to provide seed money and add-on money to enhance the own efforts of the European Federations, and not to provide significant or recurrent financial support. To find out more about how to apply for the Programme email