"Understanding Isn't Acceptance": A Focus Group of Parents of People with Moebius Syndrome, a Rare Disease

This research investigates, via a focus group, the experiences of parents of people with Moebius Syndrome (a rare disease) and the challenges that they face. The following themes of social functioning emerged from the data: caregiver reward/burden, resilience/stress, fostering independence/dependence, acceptance/stigma, and awareness/lack of awareness.