OIFE wants to focus more on pain & OI, since this is reported to be the most important challenge for people with OI besides fractures. Because of the IMPACT survey we had to postpone our pain project until 2022. But now we have reestablished our OIFE project on Pain & OI.

What has happened?

In April 2021 we announced that the OIFE was interested in getting in touch with professionals (PTs, OTs, psychologists, medical doctors, researchers, pain specialists etc) who had experience/knowledge about pain & pain management in OI (or related bone diseases). Our announcement paid off.

The expert group

We have managed to gather a group of more than 20 professionals with interest and knowledge on the topic of OI and pain. The experts come from 11 different countries incl. US, Canada, Europe and Australia and represent a wide range of specialties. A couple of the professional experts have OI themselves. In January the experts are going to take part in a brainstorming to see if there are some recommendations we could make to improve pain treatment and pain management for people with OI.

Mapping the unmet needs and priorities

Now we need input from the OI-community on what the experts should they focus on in the first phase:

  • Pain in children or adults?
  • Acute pain or chronic pain?
  • Medicinal treatment or other methods?
  • More knowledge on different kinds of pain & OI?
  • Measuring pain in a more reasonable way in the clinic (or in research)?
  • Back pain, muscular pain, neurological?

Please provide your input

What happens next?

We are currently planning a kick-off event for the expert group in January, where the experts will be introduced to each other, get to learn about each other’s projects on pain and OI and discuss future plans and opportunities.

Questions or input?

Please don’t hesitate to send us an email to president@oife.org if you are interested or have input to this project.