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Filtering by: Creator Brown, Nicholas Samuel Resource Type Preprint

"Rare place where I feel normal": Perceptions of a social support conference among parents of and people with Moebius syndrome

Creator:

Bogart, Kathleen R., Frandrup, Erika, Locke, Taylor, Thompson, Hanna, Weber, Natalie, Yates, Jacqueline, Zike, Nicholas, and Hemmesch, Amanda R.

Abstract:

Background Moebius syndrome is a rare congenital disorder resulting in impaired facial and eye movement. People with rare diseases like Moebius syndrome experience stigma and a lack of specialized information. Support conferences may provide important forms of social support for people with rare disorders. Aims To examine reasons for attending,...

Resource Type:

Preprint and Article

Full Text:

, Natalie Weber, Jacqueline Yates, Nicholas Zike, and Amanda Hemmesch Breaker Author note Kathleen R