Advancing treatments for rare diseases Together

Foundation governance

The organisation is governed by a Foundation Board whose members are chosen for their commitment and competencies in the field of rare diseases and drug development. The foundation’s two other main bodies are the Executive Committee and the Head Office.

EspeRare Foundation Board

The Foundation Board supervises the foundation’s affairs and the work carried out under its authority by other bodies of the foundation. The Board approves the long-term strategy, the philosophy and general policies of the foundation.

EspeRare Executive Committee

The Committee includes the member of the Head Office and representatives of the Board. Under the supervision of the Board, it is responsible for:

  • Development and management of the long-term strategy;
  • Selection and management of the foundation’s R&D programmes.


EspeRare Head Office

The Head Office is part of the Executive Committee and is directly responsible for:

  • Operational and financial daily management of the foundation;
  • Scientific and operational leadership of R&D programmes;
  • Set-up and management of advisory committees;
  • Recruitment and supervision of foundation's employees, advisors and volunteer workers.