Rarediseases.Benfriends.org is a place where members can create a group for those conditions that do not yet have a dedicated community. It all begins here. Start a group by clicking the Groups tab above. Invite others to join. Post discussions in your group to build your community. Please note that inactive groups will be removed after six months to make room for new groups.
Rarediseases.Bensfriends.org is powered by BensFriends.org, a network of patient support communities for rare diseases, and is run by volunteer moderators, most of whom are chronically ill patients themselves.
If you would like to volunteer to manage a Facebook page or moderate a community for your condition, please email a moderator here on the site.