Resources
This page lists resources of potential interest for people seeking to learn more about narcolepsy.
Harvard Medical School’s Division of Sleep Medicine and its Sleep and Health Education Program assume no responsibility for content on external sites, nor does listing here indicate any editorial endorsement or approval of the content of these sites. These resources are provided only as an aid for site visitors.
Printable resources from this web site:What Is Narcolepsy?
Understanding Narcolepsy in School Settings
Tips for Teens with Narcolepsy: Improving Alertness
Epworth Sleepiness Scale
Ullanlinna Narcolepsy Scale
Sleep Diary
Medications for Narcolepsy
About Narcolepsy (General Information)
Mayo Clinic Online
http://www.mayoclinic.com/health/narcolepsy/DS00345
The Mayo Clinic has a large website with information on many disorders, including a narcolepsy section that outlines symptoms, causes, and treatment.
Narcolepsy Network
http://www.narcolepsynetwork.org
The Narcolepsy Network is a national patient support organization and offers online forums for people with narcolepsy.
NIH-NINDS Narcolepsy Information Page
http://www.ninds.nih.gov/disorders/narcolepsy/narcolepsy.htm
This resource from the National Institute of Neurological Disorders and Stroke at the National Institutes of Health includes background information on narcolepsy and on clinical trials. Also available in Spanish.
Sleep Education
http://www.sleepeducation.com/sleep-disorders/narcolepsy/overview-facts
SleepEducation.com is a public information resource from the American Academy of Sleep Medicine and includes content on narcolepsy and many other sleep issues.
Wake Up Narcolepsy
http://www.wakeupnarcolepsy.org
Wake Up Narcolepsy is a 501(c)(3) not-for-profit organization dedicated to supporting narcolepsy awareness and research to find a cure.
What Is Narcolepsy? (PDF)
This is a summary of the disorder and outlines its symptoms, causes, diagnosis, and treatment. The content is based on information in this website.
Driving
US National Highway Traffic Safety Administration Report on Driving Safety and Medical Conditions (PDF)
http://www.nhtsa.gov/people/injury/research/Medical_Condition_Driving/
This is a 2005 report from the US National Highway Traffic Safety Administration on how medical conditions—including narcolepsy—affect driving.
Evaluating Sleepiness and Finding a Sleep Doctor
Epworth Sleepiness Scale (PDF)
This questionnaire will help you assess daytime sleepiness.
Find a Sleep Center
http://www.sleepeducation.com/find-a-center
This site allows users to search for a board-certified sleep medicine physician at an accredited sleep center. However, the directory is not a comprehensive list of providers.
Sleep Diary (PDF)
This log will help you track daily and weekly sleep patterns.
Medication Financial Assistance Information
Caring Voice Coalition
http://www.caringvoice.org/2011/09/financial-assistance/
Caring Voice Coalition is a national charity offering financial assistance and other services to individuals and families affected by chronic disorders, including narcolepsy.
Narcolepsy at School
The National Center for Learning Disabilities
http://www.ncld.org/parents-child-disabilities/ld-rights
This nonprofit association website has information about the legal rights of children with disabilities.
Tips for Teens with Narcolepsy: Improving Alertness (PDF)
This is a guide for students, and may also be useful for teachers. The content is based on information in this website.
Understanding Narcolepsy in School Settings (PDF)
This is a guide parents or caregivers can provide to schools. The content is based on information in this website.
US Department of Education: Protecting Students with Disabilities
http://www2.ed.gov/about/offices/list/ocr/504faq.html
This government publication has information about the education of children with disabilities, including an explanation of what services are available under Section 504 of the Americans with Disabilities Act (ADA).
Research on Narcolepsy and Information on Clinical Trials
http://www.clinicaltrials.gov
This resource from the National Institutes of Health provides background information on clinical trials, as well as a registry of public and privately supported clinical studies.
Harvard Medical School: Systems Neurobiology Group
https://sleep.med.harvard.edu/research/labs/89/Systems+Neurobiology+Group+Scammell
This website outlines the research from the Systems Neurobiology Group at the Harvard Division of Sleep Medicine, headed by Dr. Thomas Scammell, writer and editor of this Narcolepsy module.
Stanford Center for Narcolepsy
http://med.stanford.edu/psychiatry/narcolepsy/
This website outlines research at the Center for Narcolepsy at the Stanford School of Medicine, headed by Dr. Emmanuel Mignot of Stanford University.
UCLA Center for Sleep Research/Siegel Lab at UCLA
http://www.semel.ucla.edu/sleepresearch
This website outlines research from the lab of Dr. Jerry Siegel of the University of California, Los Angeles, with information on narcolepsy and other sleep topics.
Support Organizations and Forums
Daily Strength’s Online Narcolepsy Support Group
http://www.dailystrength.org/c/Narcolepsy/support-group
Daily Strength is a website that has support forums on many subjects, including narcolepsy and other medical disorders.
Talk About Sleep
http://www.talkaboutsleep.com/
Talk About Sleep is a service organization dedicated to information and awareness regarding sleep issues. The site is not limited to narcolepsy, but rather includes information on a range of sleep topics.
Yoursleep.aasmnet.org
http://Yoursleep.aasmnet.org/
This resource from the American Academy of Sleep Medicine has information for patients about a broad range of sleep topics. The site includes forums where visitors can post questions about narcolepsy.
This content was last updated on December 15, 2014.