The OIFE consists of more than 35 member organizations. Each member organization is represented by a delegate, normally with 1-2 replacements (substitutes).
The delegates form the Board of the OIFE. The Board usually comes together once a year at our Annual General Meeting (AGM). All delegates can participate at the AGM, but only delegates from ordinary member organizations have a vote. Votes can also be cast on email.
The Executive Committee
The Board elects an Executive Committee (EC) of five people responsible for running the daily business of the OIFE.
Ingunn WesterheimOIFE president - email@example.com
Dace Liepina1st vice president
Bruno Van Dijck2nd vice president
Coreen KeldayTreasurer - firstname.lastname@example.org
Anna RossiCommunication manager
The appointed volunteers
The OIFE is run entirely by volunteers. Some are formally appointed by the EC.
Supports the EC with administrative tasks and editing the OIFE Magazine.
Assist the EC with the technical aspects of the OIFE website. Content is coordinated by OIFE’s secretary.
Social network coordinator
Assists the EC 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 - email@example.com
Ute WallentinSocial Network Coordinator - firstname.lastname@example.org
Stephanie ClaeysYouth Coordinator
Simey TruongYouth Coordinator
Rebecca Tvedt SkarbergERN BOND ePag
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?