The European Rare Diseases Research Alliance (ERDERA) is excited to announce the call for nominations for its Multistakeholder Advisory Board (MAB). By supporting innovative research, developing new diagnostic methods, and spearheading digital transformation, ERDERA aims to create a collaborative and comprehensive ecosystem for rare disease research and patient care.
To support its ambition and missions ERDERA has been designed as a comprehensive and integrated ecosystem of which its structure can be compared to an institute encompassing three main parts: (i) funding, (ii) internal (in house) Clinical Research Network that implements research activities targeting clinical trial readiness of RDs and accelerating diagnosis and translation of research discovery into improved patient care, and (iii) related supporting services (Data, Expertise, Education and Training) as well as an acceleration hub that serves external and internal RD community.
The permanent MAB will be established to provide an objective overview of the progress in ERDERA and allow informed advice on the future directions. The MAB will support the Consortium, the Governing Board, and the Board of Funders by providing key advice that will feed into the strategy of the research and support activities foreseen in ERDERA. In addition, the MAB will advise on how to better address patient needs as key drivers for funded research and support activities, with a focus on priorities that maximise the impact of the partnership.
ERDERA aims to engage advisory board members with the following expertise:
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
To apply, please send your CV and a Letter of Motivation to mab-erdera@ejprarediseases.org by October 31st, 2024, 6 PM CET.
Please click here to find more information.