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EURORDIS launches call for Digital and Data Advisory Group (DAG) volunteers

April 2023

EURORDIS-Rare Diseases Europe has announced the call for volunteers to join 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.

The organisation is looking for three dedicated individuals to join the DAG. While experience in the digital area is desirable, it is not mandatory. The organisation will provide capacity-building opportunities during the mandate to help volunteers understand the context and strengthen their understanding of the issues at stake.

Members of the DAG have previously contributed to several EURORDIS positions of European impact, as well as shaping the approach to patient engagement and patient centricity on two European-level projects, such as FACILITATE and Screen4Care.

The DAG also seeks to ensure that EURORDIS is able to make patient and caregiver voices play a pivotal role in the development of this field. Members of the group will also look for opportunities to influence strategic decision-making and help EURORDIS assess and bring views of patients to the highest level.

All EURORDIS full and associate members who have a strong interest in digital health, a high level of English fluency, and are a member of EURORDIS’ network are eligible to participate. Attendance at a training on Data and Digital organised by a patient organisation is desirable. The term of the nomination for the DAG is for a term of three years with yearly confirmation based on participation and commitment. The required commitment includes an average of four hours per month, availability for a minimum of four to eight e-meetings, and up to two face-to-face meetings per year.

EURORDIS will ensure the adequate coordination of the activities of the Digital and Data Advisory Group with the support of Veronica Popa, EURORDIS Digital Patient Engagement Manager.

Interested members can submit their applications by completing our application form.

The deadline for submitting applications is 15 June 2023.

Should you require any additional information, email our colleague Veronica Popa at