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Patient Stories

Snowmobiling for Narcolepsy

Snowmobile Narcolepsy Fundraiser

Mindfulness Meditation Program Study

If you have been diagnosed with narcolepsy and struggle with depression or anxiety, you may qualify for a study. The Behavioral Sleep Medicine Lab at Northwestern is […]

FDA Approved the Expanded Use Of WAKIX® (pitolisant) for the Treatment of Cataplexy

Harmony Biosciences Holdings, Inc. (“Harmony”) announced that the US Food and Drug Administration (FDA) has approved WAKIX® (pitolisant) for the treatment of cataplexy in adult patients with […]

Youth Ambassadors and Co-Chair Nominated for Award

Youth Ambassadors Brandon Beck and Caroline Arnette and Youth Ambassador Co-Chair Cynthia Zorn have been nominated for the 2020 RARE Champion of Hope Award by Global Genes, […]

Videos of Your Cataplexy

Do you have videos of what your cataplexy looks like and would be willing to share? Marilyn Swick and Dr. Todd Swick have been working in sleep […]

Youth & Young Adult Ambassador Workshop

Our first virtual Youth Ambassador Workshop was a huge success, training more than 30 youth and young adults. Narcolepsy Network will be hosting additional Youth Ambassador workshops […]

Board Member is Featured in a Video Series

Our Board Member, Dr. Luis Ortiz, is featured in a video series about doctors with narcolepsy.

A New Program that Connects Children with Narcolepsy

blished a new program that connects children with narcolepsy! Children, ages 8-13, who have been diagnosed with narcolepsy and their parent, are invited to join us virtually for a time of support, caring, and fun.

Focus Group Participants Needed to Develop a Pediatric Narcolepsy Patient-Reported Outcomes Scale (PN-PROS)

Currently, there is no tool to assess the symptoms of narcolepsy that most significantly impact the daily functioning of children with narcolepsy.  This study hopes to develop […]

Narcolepsy Advocates Attended Rare Disease Week

Narcolepsy Network sent 20 advocates to Washington, DC to be a voice for the narcolepsy community. Every year, the Rare Disease Legislative Advocates (RDLA), in coordination with […]