Moebius syndrome, a rare disorder characterized by facial paralysis, has gained attention due to advocacy from affected communities. The Moebius Syndrome Foundation has championed for research, particularly focusing on sleep disturbances like nightmares and insomnia that affect individuals with the disorder. Despite anecdotal evidence, rigorous scientific studies on these issues have been limited. A recent initiative involving a grant to fund sleep research has led to a new study highlighting potential links between Moebius syndrome and REM sleep behavior disorder, underscoring the need for further investigation into these sleep problems.
The power of patient communities in advocating for their needs and building collective knowledge is immense. A prime example is the rare disorder community.
Anecdotal reports of sleep disturbances-nightmares, night terrors, and insomnia-have been common topics at foundation conferences and on social media. Yet scientific research has been sparse.
Recognizing the need for more comprehensive research, the Moebius Syndrome Foundation created a grant program to fund Moebius syndrome sleep research, reflecting community advocacy efforts.
Our study consisted of two phases, revealing that sleep issues like REM sleep behavior disorder might be unusually common among individuals with Moebius syndrome.
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