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...
Although the importance of the face in communication is well-known, there has been little discussion of the ramifications for those who lack facial expression: individuals with facial paralysis such as Bell’s palsy and Möbius syndrome, and facial movement disorders like Parkinson’s disease. By examining the challenges experienced by these individuals,...
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,...