A stronger BOND between us

The OIFE is trying to develop a stronger connection between the different stakeholders working on OI and other rare bone disorders (including rare skeletal bone dysplasias).

OIFE sees the need to educate more patient representatives & volunteers in the rare bone community to:

  • serve as volunteers
  • to run patient organizations
  • to contribute as patient representatives in research, development and clinical networks as ERN-BOND
ERN bond meeting

We want to develop a capacity building programme for rare bone disease organizations in order to:

  • Provide good services to members & people with rare bone diseases
  • Provide accurate information about rare bone diseases like OI to all target groups
  • To serve as active and knowledgeable policy makers
  • To serve as active and knowledgeable stakeholders in collaboration with researchers, clinicians and industry
  • To support rare bone organizations in recruiting patient representatives for
    • ERN-BOND
    • research projects
    • development of registries and guidelines
    • European Medicines Agency (EMA) & FDA
    • Health Technology Assessment – Internationally and Nationally

The OIFE project is currently in the phase of planning & networking. We suggest that the capacity building programme should consist of 3 main modules:

  1. European Reference Network for Rare Bone Disorders (ERN-BOND)
  2. Patient involvement in research and & development
  3. Organizational training

We are planning different activities connected to the programme, which might include workshops, conferences, webinars and more.

Are you interested in getting involved? We are interested in getting in touch with professionals, companies or representatives from OI-organizations who might be interested in contributing in or taking part in the project. Please contact office@oife.org

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