In March 2023 OIFE started the work of creating a toolbox on pain and osteogenesis imperfecta.  The aim of the toolbox is to enable people with OI to learn more about pain management. It will also include information and tips which you can discuss with your care provider when communicating around pain. What would YOU like to see included in such a toolbox?

Pain and OI survey

OIFE is partnering with the OI Foundation on a new project investigating the experience of pain in people with OI.  The survey is for anyone 18 years old or older.  It was written with input from OI experts from North America and Europe.

The survey has been developed by the international Pain and OI Project team.  Through the project we hope to learn more about pain in OI, including:

• the different types of pain people experience
• severity of pain and frequency
• how it impacts on quality of life

Findings from this survey will subsequently be published online and presented at OIFE’s Topical Meeting, ‘Balancing Life with OI’ in Stockholm, Sweden from June 9-10, 2023.

Finally, we will use input from the pain survey when developing the toolbox on pain and OI so make sure to answer this as well.

How can you help?

Above all, we need your input:

• Please let us know what features and information you would like to see in a toolbox on pain management.  You can do this by sending an email to office@oife.org.
• And if you haven’t already done so please click here to take the pain and OI survey, deadline 1st April 2023.