The Annual General Meeting (AGM)

Each year all delegates are invited to the Annual General Meeting (AGM). Anyone from our member organizations can attend the AGM. In addition OIFE volunteers, volunteers from other organizations, professionals and other people with an interest in OIFE can be invited. At the AGM the EC accounts for OIFE’s activities in the past year, future plans and policies are discussed and members exhange news and ideas.

The Youth Events

Every year one of OIFE’s member organizations hosts the OIFE Youth Event. This is an informal meeting for young people with OI. The age limit has varied, but the event is usually open to people between the age 16 and 30 – 35. The main focus is to gather youth from all over Europe to exchange thoughts and ideas about being young with OI and to network in order to engage future volunteers.

Youth event on boat

Topical meetings

OIFE’s Topical Meetings usually take place approximately every third year. The purpose of the events is to create an arena where interested professionals and experienced specialists from all over the world can meet and exchange knowledge and experience on a specific OI-related topic. Relevant topics are chosen by the EC – usually because they need extra focus. Former topics have included:

  • Orthopaedic aspects
  • Physiotherapy and rehabilitation (OI in motion – Germany, 2009)
  • Psychosocial aspects in OI (Fragile Bones – Unbreakable Spirits? Portugal, 2012)
  • Physical challenges on adults with OI (Soft Issues & Soft Tissue, Norway 2015)

Attendance at other OI-conferences

The OIFE try to attend the major conferences with the topic of osteogenesis imperfecta as well as conferences related to children with bone diseases (ICCBH). We have attended the following conferences on OI & brittle bone diseases:

201713th International Conference on OI (OIOslo2017) – Oslo, Norway
2017ICCBH, Würzburg, Germany
2016OI in 2016 (Unbreakable Alliance), Lisbon, Portugal
2015ICCBH, Salzburg, Austria
201412th International Conference on OI – Wilmington, Delaware, USA
201111th International Conference on OI – Dubrovnik, Croatia
200810th International Conference on OI – Ghent, Belgium
20059th International Conference on OI – Annapolis, Maryland, USA
20028th International Conference on OI – Annecy, France
Leaflets OI in 2016

The OIFE regards it as vital that patient representatives are allowed to participate in scientific conferences, where the target group is mainly professionals. Without this opportunity we lose our possibility of doing important networking and keeping up with what’s going on in the world of research & development.

We aknowledge that these events are for the professionals and we don’t expect them to be adapted to our needs (except from physical adaptations). But we do expect to be allowed to participate – as representatives from OI-organizations worldwide.