Are you a parent of one or more children or adolescents with OI? Would you like to help the OIFE with focus groups and panels hosted by researchers, companies or other stakeholders working to improve care and treatment for children with OI? Can you communicate in English?

OIFE is more and more often asked to find parents who are willing to share their experiences about being an OI-parent. Since OIFE do not have individual members (only organizations), we have seen the need to develop a resource group consisting of parents who are willing to take part in focus groups or panels. Usually the time requirements are 1-3 hours in a videocall. Sometimes it’s paid and sometimes not.

Please let us know whether you are willing to be a member of such a resource group!

When you have signed up, we will contact you to have more details about your location and languages you communicate in. We might also need information about your child’s birth year, gender and type of OI. It’s also useful for us to know if your child has any experience from clinical trials on OI.

You will not be required to say yes every time we ask, or stay in the group longer than you want to. It’s just to make it easier for us to know who we can contact. Otherwise we end up asking the same people over and over and over again.

If you would like to help us by joining the group, send an email to office@oife.org and we will contact you for further information.