Governance
The Orphanet-AISBL is governed by three main bodies ensuring transparency, accountability, and effective management.
- The General Assembly, composed of all Full and Associated Members, defines the overall orientation of the Association, approves the annual report and budget, and appoints the Board of Directors.
- The Board of Directors provides strategic oversight and ensures the implementation of Orphanet-AISBL’s mission and objectives.



- The Secretary General is responsible for the daily management of the Association and represents it in all operational matters.
Operations
Chief Operating Officer (COO)
The COO implements the organisation’s strategy and oversees the development of Orphanet-AISBL’s services in line with stakeholder needs. In close collaboration with the Board of Directors, the COO defines priorities, represents the organisation towards partners and users, and contributes to a long-term strategic plan that ensures growth and success.
Founding Members
Preferred Partner’ status, i.e. they will, by priority and routinely, be consulted for services against remuneration.


