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Filtering by: Creator Hemmesch, Amanda R. Creator Bogart, Kathleen R.

Benefits of support conferences for parents of and people with Moebius syndrome

Creator:

Bogart, Kathleen R. and Hemmesch, Amanda R.

Abstract:

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...

Resource Type:

Preprint and Article
"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