Benefits of Support Conferences for Parents of and People With Moebius Syndrome

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Hundreds of millions of people worldwide with rare diseases face unique challenges to quality of life (QoL), including stigma and limited support. To address these concerns, many rare disease organizations offer support conferences for people to meet others with their condition. This is the first research to examine the effects of a support conference for a rare disease, Moebius syndrome (MoS), a condition characterized by impaired facial and eye movement. Parents of and adults with MoS were predicted to receive different QoL benefits from support conferences. Individuals with MoS were predicted to receive psychosocial benefits including increased social comfort, emotional and companionship support, and reduced stigma, anxiety, and depression. Parents of people with MoS were predicted to gain rare disease self-efficacy, including increased informational and instrumental support, disability self-efficacy, or perceived competence in managing a disability, and knowledge about managing their child’s MoS. Forty-seven adults with MoS and 48 parents completed an Internet-based survey 4 weeks before attending or not attending a support conference for MoS and 6 weeks after the conference. Correlational and pre–post analyses supported that adults with MoS received social comfort benefits, reduced stigma and increased perceived knowledge from support conferences, but no pre–post changes in anxiety, depression, or social support were detected. After applying a more conservative Bonferroni correction, only perceived knowledge remained significant. For parents, correlations suggested that repeated conference attendance was associated with rare disease self-efficacy and perceived knowledge, but no pre–post changes were detected. Rare disease support conferences are promising QoL interventions.

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