The role of patient groups

 Rare disease patient groups in the European Union

 What is a patient group?

 Small patient groups

 Large patient groups

 National alliances of rare disease patient groups

 So very rare: when no patient group exists

 European rare disease organisations - alike and yet so different

 Guidelines for involving patients’ organisations in decision-making processes

 Patient organisation or not?

 A new Network for European Rare Disease Federations

 Some Profiles of Patient Groups