OIFE at Council of Federations meeting

November 9th and 10th OIFE was represented by Ingunn Westerheim at the Council of Federations (CEF) meeting of EURORDIS – the European umbrella organization for rare conditions. The socalled CEF is a forum where umbrella organizations and federations for rare conditions in Europe come together to learn about news in the European rare disease field and to provide input to EURORDIS in important policy questions.

Topics for this edition of the meeting where OIFE attended included:

  • Revision of the general pharmaceutical legislation (public consultation)
  • A new EURORDIS programme for Community Advisory Boards (CABs) 
  • A new training by EURORDIS on how patients can take part in Health Technology Assessments (HTA)
  • How can federations prepare themselves for a new pilot at the European Medicines Agency (EMA), when the evaluation of a new medicine starts?
  • Status on access to orphan medicines

Many of the topics were very relevant to activities that OIFE are involved in these days, and we gathered important knowledge that will hopefully make our work easier.

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