In addition to our Facebook-page, the OIFE has two closed moderated Facebook-groups in English language:
The groups are only open to people with OI, because we believe that experience is better shared between peers. OIFE does not have a general Facebook-group. We encourage people to follow our Facebook-page instead.
For parents of children with OI – we encourage people to join the moderated American Facebook-group “OI parents“.
The photo is taken from the OIFE youth event in the United Kingdom in 2016.
Social Network Coordinator
The OIFE does not in any case provide financial support to individuals. We can provide advice and peer support and help to find OI-groups or doctors where the actual person lives. In some cases we use our list of professionals to find local support and skilled OI professionals.
The Social Network Coordinator’s role is to guide individuals who needs help to:
- find an organization or support group in their country
- find information about OI
- find treatment or professionals with knowledge about OI in their country
- start an organization in a new country
She also tries to connect individuals in new countries and encourage the establishment of new groups and OI-organizations.