Are you aware of OIFE’s closed Facebook peer group for adults who have OI? We have now reached the great milestone of one thousand members with OI. But there is room for more, so keep telling your OI-friends about it!

Who can join?

The group is open only for people who have OI themselves. This because we believe health related experiences are better shared among peers. You don’t have to belong to one of OIFE’s member organizations to be part of the group, but you have to be able to communicate in English (both read and write). Parents without OI or staff members are not allowed into the group.

What kind of group is it?

In the peer group adults with OI can share experiences about living with OI and getting older with others who might have similar experiences. Questions of various kinds can be asked and answered, such as:

  • medical issues or concerns;
  • personal experiences related to a life with OI;
  • seeking & giving emotional or psychosocial support
  • practical hints and possible solutions
  • personal advice from the experience of peers
  • helpful adaptations for the daily life with OI

Other topics than OI-related questions/posts are not allowed and the group is strictly moderated.

Invite your OI-friends to join!

Please inform people with OI who might be interested to join the group by sharing the following link:
https://www.facebook.com/groups/OIadulthealth