Structure and Governance
Addressing rare diseases from multiple perspectives
ERDERA has been designed as a system comprising seven integrated services to move rare disease research forward. Patient and public involvement and engagement (PPIE) is woven throughout, guiding all services, activities, and governance across the partnership.
Read how these pillars translate into concrete objectives and milestones in our Strategic Research and Innovation Agenda (SRIA).
Patient and Public Involvement & Engagement (PPIE) – at the core
People living with a rare disease and their representatives co-design priorities, sit on decision-making boards and help evaluate funded projects. Training and mentoring opportunities enable meaningful participation across the entire ERDERA structure.
ERDERA governance
The governance of ERDERA is built on collaboration, transparency and strategic coordination, ensuring that the partnership remains impactful, efficient and aligned with European and national priorities. ERDERA’s structure brings together national and international experts, funders, and stakeholders through a set of key bodies with defined roles. Discover ERDERA’s team.
DECIDE
Governing Board (GB): The Governing Board is ERDERA’s main decision-making body. It is composed of representatives from participating countries, patient organisations, industry, EU research infrastructures, the European Commission, and other key stakeholder groups. The GB is responsible for steering the overall strategic direction of ERDERA, approving annual work plans, and ensuring alignment with European and national policies. It also plays a key role in supporting the uptake of ERDERA outcomes and planning for sustainability.
Board of Funders (BoF): The Board of Funders works alongside the GB but focuses specifically on decisions related to joint transnational calls. It ensures financial coordination and commitment from national and European funder
EXECUTE
General Assembly (GA): The General Assembly involves all partners and plays a key role in shaping ERDERA’s scientific priorities. It prepares strategic proposals—such as updates to the Strategic Research and Innovation Agenda (SRIA), work plans, and sustainability plans—for discussion and approval by the GB.
Executive Committee (ExCom): The Executive Committee oversees the day-to-day implementation of ERDERA’s activities. Composed of the Coordination Team, Work Stream leaders and Work Package leaders, it ensures progress towards milestones, quality control of outputs, and alignment with the strategic plan. It prepares content for decision-making by the GB and handles any necessary adjustments during implementation.
Operating Group (OG): The Operating Group includes the Coordination Team and Work Stream leaders. It ensures smooth internal communication and coordination across work streams, supporting reflection on ERDERA’s progress and future directions.
Coordination Office: Led by INSERM, the Coordination Office manages the scientific, administrative, and financial operations of the partnership. It acts as the main liaison with the European Commission and represents ERDERA at both EU and international levels.
ADVISE
Multistakeholder Advisory Board (MAB): The MAB consists of 20–25 independent experts from various sectors, including patient organisations, academia, regulatory bodies (e.g., EMA, FDA), European Reference Networks (ERNs), HTA representatives, and ethicists. Its role is to provide strategic advice and help shape the partnership’s research and support activities. MAB ensures that patient needs are central, and it can establish Thematic Groups to expand expertise when needed.
National Alignment Board (NAB): The National Alignment Board brings together representatives from each participating country’s National Mirror Group and, where relevant, the European Commission. It supports national alignment and exchange of best practices and includes voices from underrepresented countries. It may also liaise with broader European networks to maximise impact.