The European Rare Diseases Research Alliance (ERDERA) is excited to announce the call for nominations for its Multistakeholder Advisory Board (MAB). Our mission is to transform the landscape of rare disease research in Europe and improve the lives of over 30 million people living with rare diseases.
By supporting innovative research, developing new diagnostic methods, and spearheading digital transformation, ERDERA aims to create a collaborative and comprehensive ecosystem for rare disease (RD) research and patient care.
What does the MAB do?
The Multistakeholder Advisory Board (MAB) will provide strategic guidance to ERDERA, helping shape research and support activities that are directly aligned with patient needs. The MAB will play a key role in advising on clinical research, funding strategies, and collaboration opportunities.
We are looking for experts in:
- Rare Disease Researchers & Geneticists
- Healthcare Professionals
- Public-Private Partnership & Industry Professionals
- Digital Health & Data Scientists
- Regulatory, HTA, & Policy Experts
- Funding & Grant Management Specialists
- Education & Training Professionals
- Strategic Coordinators & Program Managers
- Ethics & Patient Consent Experts
- Legal Experts in Healthcare
MAB member expectations:
- Initial term: 3 years, with the option to renew for 4 more years
- Meet every four months, with at least one in-person meeting in the first year
- Opportunity to form thematic groups to provide specialized advice
How to apply:
Interested in shaping the future of rare disease research? Submit your CV and Letter of Motivation to mab-erdera@ejprarediseases.org by October 31st, 2024, 6 PM CET.
We’re committed to selecting MAB members based on expertise, geographical diversity, gender balance, and conflict-of-interest considerations.
Join us in driving forward innovation in rare disease research!
Click here to find more information.
