The General Assembly
The OIFE consists of more than 35 member organizations. Each member organization is represented by an official representative and 1-2 replacements (substitutes) during the year.
All organizations are invited to attend and to speak at the general assembly, but only ordinary (European) member organizations have a vote. The general assembly was previously called the Annual General Meeting (AGM).
The voting members of the general assembly elects a Board of minimum four people responsible for running the daily business of the OIFE.
From October 23rd the OIFE Board will consist of seven people. The Board was previously called the Executive Committee (OIFE EC).
Ingunn WesterheimOIFE president - firstname.lastname@example.org
Bruno Van DijckVice President
Coreen KeldayTreasurer - email@example.com
Anna RossiCommunication manager
Malene SillasBoard member
Stephanie ClaeysBoard member
Jacob WittorffBoard member
The appointed volunteers
The OIFE is run entirely by volunteers. Some are formally appointed by the Board.
Supports the Board with administrative tasks and editing the OIFE Magazine.
Assist the Board with the technical aspects of the OIFE website. Content is coordinated by OIFE’s secretary.
Social network coordinators
Assists the Board with helping individuals who contact the OIFE with questions or need for advice or support.
Support local organizers with hosting youth events, moderate Facebook-group and peer support to young people with OI.
ERN BOND ePAG
Patient representative in the European Reference Network for Rare Bone Diseases (ERN BOND). Appointed by OIFE, but represents people with OI in general.
Steffi WagnerSecretary - firstname.lastname@example.org
Ute WallentinSocial Network Coordinator - email@example.com
Maria BarberoSocial Network Coordinator
Matilde Medum NielsenYouth Coordinator
Simey TruongYouth Coordinator
Rebecca Tvedt SkarbergERN BOND ePags
Claudia FinisERN BOND ePags
Other volunteers are helping out on different projects, activities and ad hoc tasks. We have contacts all over the world, including OI-groups, professionals and partners in the rare disease community.
Are you interested in helping us?