EURORDIS Leadership School

The EURORDIS Leadership School on Healthcare & Research consists of a series of online courses and two days of face-to-face training, in November.

The EURORDIS Leadership School aims at empowering patients to be valued partners in European Reference Networks (ERNs). It provides a capacity-building programme for European Patient Advocacy Groups (ePAGs) on leadership, network management, healthcare and research.

The Leadership School covers a diverse range of topics including: self-awareness on leadership skills, communicating with impact, conflict resolution, networks, healthcare pathways, integrated care, e-health, research, therapeutic development and knowledge generation.

Expert trainers from across Europe deliver the online and the face-to-face training.

Next face-to-face training

The first face-to-face training of the EURORDIS Leadership School took place 26-27 November 2019 in Barcelona.


The EURORDIS Leadership School is a capacity-building programme specifically for the patient advocates of the European Patient Advocacy Groups (ePAGs).

60 ePAG advocates take part in the programme, split into 2 groups:

  • Advocates Group (30): ePAG advocates active in their own disease area, involved in a disease-specific core network and in topic-based working groups, within their ERN;
  • New Leaders Group (30): ePAG advocates who are leaders representing the wider patient community in ERN Boards and in topic-based working groups.

Financial support

The EURORDIS Leadership School 2019 has received funding under an operating grant from the European Union’s Health Programme (2014-2020) and under the European Union’s Horizon 2020 Research and Innovation Programme, notably under the European Joint Programme on Rare Diseases (grant agreement N°825575).