European Reference Network & Healthcare Director

Job Category

Job Experience

Job Location

Expiration Date

25 Nov 2017

About EURORDIS-Rare Diseases Europe

EURORDIS is a unique, non-profit alliance of 765 rare disease patient organisations from 69 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.

Key tasks & responsibilities in the position

The ERN & Healthcare Director will monitor the European landscape on rare disease healthcare from a policy and advocacy perspective, managing all related activities. You will specifically support the establishment of European Reference Networks (ERNs) and a meaningful patient advocates’ engagement through their activities and the 24 European Patient Advocacy Groups (ePAGs), that were set up by EURORDIS. The support and follow-up of these groups is managed by three members of the EURORDIS team, one on a full-time basis.  The purpose of the mission is to improve the patient outcomes and the patient experience across rare diseases and Europe, ensuring that the voice of the patients is heard at every stage of the process.

The main scope of this post includes:

  • To lead on fostering a clinical-patient partnership and realise meaningful patient engagement, involvement and empowerment in European Reference Networks’ governance structures and network activities.
  • To steer the patient engagement and involvement process through the ePAGs and work on their development with dedicated team members in EURORDIS.
  • To represent the patient community and work with our partners in how the ERNs design, implement and enhance the healthcare pathway and patients’ health outcomes through the adoption and application of quality improvement strategies.
  • To identify and actively pursue new strategic opportunities, leading and participating in new consortiums in the development of new EU projects and grant funding related to rare disease healthcare.
  • To cooperate closely with the Public Affairs Team, by providing expertise on public affairs topics relevant to the rare disease healthcare and ERNs and contributing to the definition of public affairs strategies in the field, while ensuring that all relevant policy areas are addressed in a comprehensive way and with a long-term view, in line with EURORDIS’ key priorities.
  • To lead and coordinate internally team collaboration in EURORDIS, to ensure the alignment and integration of the healthcare and research infrastructure and pathways, optimising these for the rare disease community.

Experience and skills/qualities

  • Extensive knowledge of healthcare systems and health policy at large.
  • Experience of supporting strategic and operational development of clinical / research networks and/or eHealth infrastructure.
  • Demonstrated track record of successful partnership working specifically with patient engagement, involvement and empowerment.
  • Knowledge and experience of applying quality improvement strategies and methodologies.
  • English mother tongue or fully bilingual with several years of experience in an English-speaking environment and excellent English writing and presentation skills.
  • Educated to master degree level or equivalent.
  • The ideal candidate is organised, autonomous, reactive, reliable and flexible in order to keep track of the different activities. He/she has the capacity to evaluate priorities, the ability to perform under stress and to take initiatives and good team working ability.


50 - 60 000 € gross per annum according to experience


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