10 Great Resources for Narcolepsy

We’ve assembled a list of our favorite narcolepsy resources–from guidebooks to support groups.        


(1) Understanding, Living With, and Treating Narcolepsy
This website is run by the Division of Sleep Medicine at Harvard Medical School. It contains information and videos about narcolepsy diagnosis and treatment, current science and research, and advice for living with narcolepsy.

(2) Falling Asleep: A Narcolepsy Guidebook
Falling Asleep is an online guidebook presenting narcolepsy information with easy-to-understand language and illustrations.  In addition to basic information, this website delves deeper into the effects narcolepsy can have on daily life and emotional well-being.


(3) Twitter #Nchat
A narcolepsy Twitter chat happens on the first Saturday of every month at 5:00pm EST under #Nchat.  It was founded by @stridesagainstN in 2012 and continues to grow in popularity.

(4) Narcolepsy: Not Alone10628390_628308930619710_7020982230274692482_n
The Narcolepsy: Not Alone campaign invites people with narcolepsy and supporters from all over the world to send in photos.  Launched in July 2013, the growing photo community now includes photos from all 50 U.S. States and 35 countries around the world.

(5) Facebook Support Group
This Facebook group, viewable only to members, was founded by Narcolepsy Network, Inc. as a safe environment in which people with narcolepsy and their loved ones can share information about narcolepsy. Today, the group has over 4,000 members and many active discussion threads each day.

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(6) Narcolepsy Advocacy Center
The Narcolepsy Advocacy Center app (app code: NACJF) is the first-ever mobile app for narcolepsy. Features include a personal daily diary tool, fact sheets, infographics, videos, a PowerPoint presentation, and more.



(7) Narcolepsy: A Funny Disorder That’s No Laughing Matter by Marguerite J. Utley41MZJYF4P6L._SL500_AA300_
This book published in 1995 blends science and personal experience to provide straightforward information about symptoms, diagnosis, treatment, and coping with the social, emotional, and legal issues surrounding narcolepsy.  Nearly 20 years later, it’s still considered a must-read for people with narcolepsy and their supporters.

(8) Wide Awake and Dreaming by Julie Flygare
This memoir published in 2012 is the story of Project Sleep’s Founder, Julie Flygare.  Julie began experiencing the symptoms of narcolepsy at age 22, while she was a law student. Her story is a first-hand account of dreams gone wrong with narcolepsy.


(9) Meetings
Narcolepsy Network, Inc. provides a list of support groups by state.

(10) Sleep Medicine Centers
This search tool lists the sleep centers in your area accredited by the American Academy of Sleep Medicine.



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