Céu and Yann Le Cam (CEO of EURORDIS).

On November 8th Céu Barreiros (treasurer) represented OIFE at the Council of Federations-meeting in Brussels hosted by EURORDIS. The Council of European Rare Disease Federations (CEF) provides a platform for the exchange of experiences and information across federations working for different diseases or group of diseases.

The council also allow federations to work together on strategies that might influence policies makers. Usually representatives from the rare disease federations meet in Brussels or Paris once every autumn.

CEF-topics in 2019

Among the topics of the meeting of the 2019-meeting were status on European Reference Networks (ERNs), funding for rare disease research through Horizon Europe, news about the European Union and access to new therapies for people with rare diseases in Europe.

Anja Helm (contact person for CEF in EURORDIS) and Céu.

The Council enables European federations like OIFE:

  • 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.

You can find reports from all the CEF-meetings at the webpage of EURORDIS.