Connect on Facebook
To participate in the Beck-Fahrner Syndrome Facebook Support Group, families need a Facebook account. To protect confidentiality, the group is set up as a private Facebook group. This means only accepted members can view the content and member contributions. Families can request to join the group by clicking the “Join” button on the group page. Then, families will be prompted to share their connection with Beck-Fahrner syndrome for group membership approval.
Connect on Rareconnect
To join the Rareconnect.org group, families must create a login. Setting up an account is free, and only requires an e-mail. Once an account is created, families are automatically part of the “General Discussion” community, which is the space where all Rareconnect members with varying rare diagnoses can interact. Families can click on “Communities” and search for the “Beck-Fahrner Syndrome Community” to join our specific community. Rareconnect allows members to post thoughts, questions, etc. to one another, and also has sections for members to upload documents/resources that might be helpful for the community. There is also an international map feature that pindrops where each community member is located globally.