The OIFE does not fundraise for research, but we promote research by doing the following:

  • Encouraging more research in OI on different aspects
  • Networking with researchers & clinicans worldwide
  • Trying to be informed on ongoing research in OI worldwide
  • Disseminating results from research through our communication channels
  • Assisting with recruitment through advertising studies in OIFE Magazine or social media
  • Endorsing specific studies in their application process
  • Partnering (on rare occasions) with specific studies with a broad international scope
Research

Sometimes the OIFE can also assist with finding patient representatives for international research projects or meetings at the European Medicines Agency (EMA). But we have limited resources – because of the lack of educated patient experts in OI.

The OIFE attends scientific conferences on OI to network and interact with researchers and keep up to date.

Research grants

The OIFE does not provide research grants, but several of our member organizations do. In addition to checking out your national organization, we encourage you to check out the grants from:

Professional networks

OIFE is deeply involved in the development and administration of the European Reference Network for rare bone disorders (ERN-BOND).

OIFE is also in touch with other research networks:

Chronic pain in OI

Do you want to increase the understanding of pain in OI? If you have OI you can contribute by answering a survey on pain and OI. See link to English and Spanish language version below.

Contact registries for people with OI

The OIFE is aware of the following contact registries or projects based on patient reported data recruiting at the moment:

Industry

OIFE collaborates with different pharmaceutical companies and companies producing orthopaedic equipment. We are always looking for more potential partners and collaborators – please contact us if you are interested!

Ongoing research

Research studies that are currently recruiting internationally: