While research on sleep in rare disease is limited, TREND’s social listening is finding issues related to sleep to be the topic of many conversations in our rare disease communities.
To further investigate, TREND Community is launching an initiative to better understand how sleep disorders impact the daily lives of people diagnosed with rare genetic diseases.
In partnership with sleep specialists Daniel Glaze, MD FAASM and Ameeben Patel, DO at Texas Children’s Hospital/Baylor College of Medicine, we created a custom Sleep History Questionnaire.
We are currently inviting caregivers of children and adults with Prader-Willi syndrome (PWS) to take 15-30 minutes to complete this online survey. Upon completion of this survey you will receive a $10 Amazon.com electronic gift card which will be sent to your email.
Click here to participate: https://survey.trend.community/zs/voCNPb