It’s important to remember that although FA is a rare disease, you are not alone. There is a whole community of people with FA and their families that face some of the same challenges as you. FARF moderates a private Facebook support group that allows adults with FA and parents of children with FA to exchange questions and information. An additional private Facebook support group only for adults diagnosed with FA is also available. Finally, a group exclusively for teens with FA is moderated by a few adults with FA.
If you’re interested in joining one of these groups, make sure you’ve signed up with FARF Family Services or reach out to FARF Family Services Director Jordan Deines.