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Eurordis - Rare Disease Europe

EURORDIS Leadership School

The EURORDIS Leadership School consisted of a series of webinars and an intensive 3-day training in October. This training has been discontinued.

The EURORDIS Leadership School empowered European Patient Advocacy Groups (ePAGs) advocates and other rare disease patient advocates to be valued partners in European Reference Networks (ERNs) and when engaging with healthcare providers and other rare disease stakeholders. Expert trainers from across Europe delivered the training webinars and sessions. The topics covered included self-awareness, leadership, communicating with impact, power and influence, conflict resolution and negotiation.

The first edition of the EURORDIS Leadership School took place in 2019 and the last edition was in 2021.


NEW! Leadership and communication skills training for patient advocates

This training is organised by ISS, Istituto Superiore di Sanità, in close collaboration with EURORDIS. The Course is a 2 days training preceded by webinars that will take place in Rome next November 2022. The International course is open to patient representatives involved in the 24 ERNs, including members of the European Patients Advisory Groups (ePAGS), and other RD patient advocates. 

Registration is now open at this LINK until the 13th of April 2022.


Take part in free online training

Learn more about international cooperation and international advocacy for rare diseases at a time and place that suits you! Take the free e-learning courses below! The conditions of use for all EURORDIS e-learning courses have been licensed with Creative Commons. More information on the conditions of use.

United Nations image

International advocacy for rare diseases

⌛️ 2h30m


Establishing an international cooperation

⌛️ 2h30m

About the EURORDIS Leadership School

  • Alumni

    Over 75 rare disease patient advocates, all ePAG advocates, from around Europe, participated in the EURORDIS Leadership School to date.

  • Financial support

    The EURORDIS Leadership School 2020 received funding under an operating grant from the European Union’s Health Programme (2014-2020). The 2021 edition receives funding under an operating grant from the European Union’s Health Programme (2021-2027).

Contact the Open Academy Team

For more information, please contact

Tamara Kovazh, Open Academy Manager - Training Coordinator

Tamara Kovazh

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