Expert by Experience: Valuing Patient Engagement in Healthcare

  • Yann Le CamEmail author
  • Matthew Bolz-Johnson
Part of the Organizational Behaviour in Healthcare book series (OBHC)


EURORDIS-Rare Diseases Europe was established in 1997 to gather all rare diseases at European level to gain visibility and create a new social space, and emerge as a civil society community able to voice the needs and expectations of 30 million people in the 48 European countries. The organization has helped establish most of the 67 disease-specific European Federations or Informal networks. The strategy is a triptych: Patient Empowerment; Patient Engagement; Patient Advocacy. Partnership with stakeholders strengthens the patient’s voice and shapes research, policies and patient services, and the expertise of experience, patient knowledge and contribution to healthcare. In this context, 24 European Reference Networks on rare diseases were established; EURORDIS led the organisation and structuring of patient involvement into these Networks.


European Organisation for Rare Diseases, EURORDIS Patient empowerment Patient engagement Patient advocacy Rare diseases European reference networks 


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Copyright information

© The Author(s) 2019

Authors and Affiliations

  1. 1.EurordisParisFrance

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