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
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.
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:
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.
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!