In addition to our Facebook page, the OIFE has two closed moderated Facebook-group in English language
OIFE’s peer group Adult Health & OI is a closed Facebook-group for adults who have OI (English language only). We welcome participants from all countries, as long as you can communicate in English.
A closed group means that only people who have been accepted by the moderators and who are part of the group can read what’s being posted on the wall.
In the group you 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
The group is ONLY open for people who have OI themselves (or people representing such persons if they don’t have a Facebook-profile). You don’t have to belong to one of OIFE’s member organizations to be part of the group.
We are looking for volunteers for moderators. If you have questions about the group/group rules you can send an e-mail to firstname.lastname@example.org.
For young people
OIFE’s peer group OIFE Youth ONLY is our closed Facebook-group for young people with OI aged 16-35. A closed group means that only people who are part of the group can read what’s being posted on the wall.
In this group you can share news, thoughts and experiences about being young with OI. Joining the group will also give you an opportunity to get to know young people in other countries than your own.
The group is ONLY open for young people (16-35 years old) who have OI themselves. Parents or professionals are not allowed to enter. You don’t have to belong to one of OIFE’s member organizations to be part of the group.
For parents of OI-children
For parents of children with OI – we encourage people to join the moderated American Facebook-group OI parents.