Category: Awareness

Recognizing Sleep-Related Symptoms of PWS

World Narcolepsy Day is recognized each year on September 22nd. Narcolepsy is a chronic neurological condition that impairs the brain’s ability to regulate the sleep-wake cycle. It affects about one in 2,000 people. Continued research suggests that children and adults with PWS experience sleep disorders including chronic insomnia and narcolepsy with cataplexy to a greater...

Tell Your US Senator to Vote Against the Reconciliation for Prescription Drug Pricing Legislation

The Reconciliation for Prescription Drug Pricing Legislation could make it even more expensive for pharmaceutical companies to develop therapies for rare diseases! The reconciliation for prescription drug pricing legislation is putting cures at risk for patients and their families. The measure was proposed in an effort to lower out of pocket costs for millions of...

Learn How to Communicate with Elected Officials and Stakeholders

Join PWSA | USA for our July Advocacy in Action webinar: Effective Communication with Elected Officials and Stakeholders - A Virtual Roundtable and Panel Discussion  When: July 25, 2022 at 2:00PM EST Register in advance here: https://us02web.zoom.us/webinar/register/WN_W4pZ9Q34R3GoO9HdBpmMbg PWSA | USA is excited to bring you this Virtual Roundtable and Panel Discussion on Effective Communication with...

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