The Executive Board of the NGO Committee for Rare Diseases has the role to represent and support the Committee. It is responsible for the supervision and decision-making regarding the Committee’s on-going work, as well as disseminating necessary information to its members.

Regular and Associate Members of the Committee can nominate individuals from their organisations for a position on the Executive Board, and can vote on its formation. The standard term is three years.

As the firstly established Board, the Inception Executive Board will have an important role in shaping the Work Plan of the Committee and guiding the direction that it should take in the future. The functions of the Executive Board are detailed in the By-Laws endorsed by the CoNGO Board and which were presented at the Committee’s official inauguration on the 11th November 2016 at the United Nations Headquarters in New York.

The current members of the Inception Executive Board are:

Ågrenska                                                               EURORDIS                                                            International Alliance of Patients´Organizations

International Alliance of women                        International Federation for Spina Bifida and Hydrocephalus                          World Federation of Hemophilia


  • Anders Olauson (Ågrenska) – Chair
  • Yann Le Cam (EURORDIS-Rare Diseases Europe) – Vice-Chair
  • Robert Hejdenberg (Ågrenska) – Secretary
  • Durhane Wong-Rieger (Rare Diseases International) – Treasurer

Other Board members

  • Kawaldip Sehmi (International Alliance of Patients’ Organizations)
  • Soon Young-Yoon (International Alliance of Women)
  • Lieven Bauwens (International Federation for Spina Bifida and Hydrocephalus)
  • Alain Weill (World Federation of Hemophilia)