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EURORDIS launches call for applications to Digital & Data Advisory Group (DAG)

Mai 2024

EURORDIS – Rare Diseases Europe is expanding its team of volunteers and inviting applications to our Digital and Data Advisory Group (DAG). The group provides advice to EURORDIS on all aspects of digital health policies and procedures, with the mission of recognising and acting upon opportunities for people living with rare diseases.

Those interested may submit their application via this online form.


The DAG’s mandate is to provide expert advice to EURORDIS on all aspects of digital health policies and procedures, leveraging your personal experience. The group has contributed to several influential EURORDIS positions and played a key role in shaping patient engagement and patient-centric approaches in numerous European projects such as FACILITATE, JARDIN, and Screen4Care.


The mission of the DAG is to identify and seize opportunities to influence strategic decision-making and ensure that patient views are represented at the highest levels. Your contributions will help EURORDIS better assess and advocate for the needs and perspectives of patients.


Participation is open to all full and associate EURORDIS members who meet the following criteria:

  • Strong interest in digital health (mandatory)
  • High level of English fluency (mandatory)
  • Active membership in the EURORDIS network (mandatory)
  • Attendance at a data and digital training organised by a patient organisation (desirable)

While a strong interest in digital health is mandatory, experience is desirable but not required. We offer capacity-building opportunities throughout the mandate to enhance your understanding of the issues at hand.


The term for the Digital and Data Advisory Group membership is three years, with yearly confirmation based on participation and commitment. The role requires an average commitment of 4 hours per month, including availability for 4-8 e-meetings and up to 2 face-to-face meetings annually.

EURORDIS will coordinate the activities of the DAG, supported by Veronica Popa, our Digital Patient Engagement Manager.

Application Process

To apply for the Digital and Data Advisory Group, please review the selection criteria and submit your application by 30 June.

For further information, contact Veronica Popa, Digital Patient Engagement Manager, at

We look forward to your applications and to welcoming new members to our team!