A tremendous amount of work has been done by The PWS Clinical Trials Consortium to understand and document the views of Prader-Willi syndrome families. Now, a new study validates what PWS caregivers have reported, by sharing first-person perspectives from people with PWS — including insightful and...
Source: FPWR Blog
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Published: July 7 2022 - 09:00 AM
Two new papers from an international group of PWS expert physicians outline the clinical experience and provide recommendations for sex hormone replacement therapy in adult males and females with PWS.
Source: FPWR Blog
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Published: June 6 2022 - 09:00 AM
A newly published paper examines sleep disorders, seizures, and psychiatric concerns in PWS. Thanks to almost 900 PWS families who completed multiple surveys in the Global PWS Registry, the study provides a great deal of valuable data and new insights into the relationship between these important...
Source: FPWR Blog
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Published: June 6 2022 - 09:00 AM
COVID-19 infections may be particularly worrisome for our loved ones with PWS, since many of the complications associated with PWS—obesity, diabetes, poor respiratory function—are known risk factors for severe COVID disease. In addition, other neurodevelopmental disorders, such as Down syndrome,...
Source: FPWR Blog
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Published: June 6 2022 - 09:00 AM
![Sleep Disorders and PWS [2021 CONFERENCE VIDEO]](https://www.fpwr.org/hubfs/social-uploaded-images/sleep-disorders-and-pws-2021-conference.png)
In this 1 hour and 19‑minute video, Dr. Aaron Chidekel, a pediatric sleep specialist, and Cindy Szapacs, mom to a teenage son with PWS, discuss excessive daytime sleepiness and other symptoms and treatments for sleep disorders in people with PWS. The session includes Q&A from participants in the...
Source: FPWR Blog
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Published: June 6 2022 - 09:00 AM
