“I don't want to let narcolepsy control me, so I'm doing all I can to educate myself.”– Leah

Advancements in the understanding of narcolepsy are happening. Sign Up Now »

Advancements in the understanding of narcolepsy are happening. Sign up now »

Tools & Resources

For you and your patients living with narcolepsy.

Know Narcolepsy provides educational tools and resources to help healthcare professionals and their patients communicate and learn more about the impact of narcolepsy.

HCP Resources

ASKING YOUR PATIENTS ABOUT THE IMPACT OF NARCOLEPSY

Use this discussion guide to help evaluate the impact of narcolepsy on your patients’ quality of life.

Discussion Guide

Use this discussion guide to help evaluate the impact of narcolepsy on your patients’ quality of life. Download PDF »

Download PDF

Discussion Guide
The Impact of Sleep-Wake State Instability in Narcolepsy

The Impact of Sleep-Wake State Instability in Narcolepsy

At Sleep Trends 2019, Drs. Karl Doghramji and Asim Roy gave a presentation on the pathophysiology of narcolepsy and the significant impact of symptoms. View presentation »

A Guide to the Pathophysiology of Narcolepsy

A Guide to the Pathophysiology of Narcolepsy

A concise guide to understanding why narcolepsy is characterized as a disorder of sleep-wake state instability and the role of histamine in promoting and stabilizing wakefulness.View PDF »

Know Narcolepsy Neurobiology Video Series

Know Narcolepsy Neurobiology Video Series

Exploring Histamine With Thomas Scammell, MD
Watch video »
Neurobiology of Sleep and Wakefulness
Watch video »
Pathophysiology of Narcolepsy
Watch video »
Role of Histamine in Sleep and Wakefulness
Watch video »

The Underlying Neuronal Processes Behind Stable Wakefulness

The Underlying Neuronal Processes Behind Stable Wakefulness

An illustrated overview of Non-REM at the Wrong Time™, REM at the Wrong Time™, and 3 H's of sleep-wake state stability. View PDF »

Resources for Your Patients

Know Narcolepsy has developed tools to help your patients better understand their symptoms and talk about the impact of the disorder. Share these educational resources with your patients during their appointments.

Know your narcolepsy symptoms

Know your narcolepsy symptoms

Narcolepsy Assessment Tool

Use this tool to help your patients assess how narcolepsy may be interfering with their lives. Encourage them to share their results at their next appointment. Go to tool »

Science of Narcolepsy

Science of Narcolepsy

Science of Narcolepsy

Help your patients understand the pathophysiology of narcolepsy with this easy-to-digest handout. Download PDF »

Know Narcolepsy Survey

Know Narcolepsy Survey

Know Narcolepsy Survey

The Know Narcolepsy Survey* was conducted to improve understanding of narcolepsy and its impact, bringing to light the need for increased education and new treatment options. Share the results with your patients or colleagues. Download PDF »

*The Know Narcolepsy Survey was a three-part survey of 1654 US adults including those with narcolepsy (n=200), the general public (n=1203), and physicians (n=251) currently in clinical practice who have treated patients with narcolepsy in the last two years. Surveys of people with narcolepsy and the general public were conducted online in March and April 2018, and physicians were surveyed in August 2018. Versta Research conducted the survey on behalf of Harmony Biosciences, LLC.1 The Narcolepsy Network collaborated on the patient survey.

Educational Organizations

Several organizations for narcolepsy and other rare diseases or sleep disorders are available. These organizations provide important information that may be useful in clinical practice as well as provide support for people living with narcolepsy and for their families.
American Academy of Sleep Medicine

The AASM improves sleep health and promotes high quality, patient-centered care through advocacy, education, strategic research, and practice standards.

Narcolepsy: Understanding, Living With, and Treating Narcolepsy

A resource from the Division of Sleep Medicine at Harvard Medical School that seeks to translate medical and scientific research on sleep for a general audience.

National Sleep Foundation

A foundation dedicated to improving health and well-being through sleep education and advocacy.

Stanford Center for Narcolepsy

A leader in narcolepsy research established in the 1980s to find the cause of narcolepsy, develop new treatments, and eventually prevent and cure this complex disorder.

Information for Your Patients

Resources to help patients talk with their healthcare professionals and find support in their community.

Global Genes Logo

Global Genes: Allies in Rare Disease

A patient advocacy organization that promotes the needs of the rare disease community.

P50 Narc Network Logo 052218 532Pm

Narcolepsy Network

A national patient support organization focused on educating and empowering people with narcolepsy as well as the public at large.

The Narcolepsy Network has gathered a list of reliable groups where people living with narcolepsy can share their experiences. Find a group in your area »

P50 Nord Logo 052218 532Pm

National Organization for Rare Disorders

A patient advocacy organization committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

Project Sleep Logo

Project Sleep

An organization raising awareness about sleep health and sleep conditions, including programming to empower and support people with narcolepsy.

Wake Up Logo

Wake Up Narcolepsy

A 501(c)(3) not-for-profit organization that seeks to raise narcolepsy awareness, bringing direction to the search for a cure while providing a strong community of support to patients and caregivers.

Wake Up Narcolepsy keeps an up-to-date list of their weekly online support group meetings that can be found here along with the latest news and educational events.

  1. Data on file. Harmony Biosciences. 2018.

Performance of routine tasks without awareness.

Sudden and brief loss of muscle tone, often triggered by strong emotions or certain situations. Narcolepsy with cataplexy is known as narcolepsy type 1.

Complete collapse to the ground; all skeletal muscles are involved.

Only certain muscle groups are involved.

Biological clock mechanism that regulates the 24-hour cycle in the physiological processes of living beings. It is controlled in part by the SCN in the hypothalamus and is affected by the daily light-dark cycle.

Frequent awakenings and inappropriate transitions between states of sleep and wakefulness during nighttime sleep.

The inability to stay awake and alert during the day.

A neurotransmitter in the brain that supports wakefulness.

Vivid, realistic, and frightening dream-like events that occur when falling asleep.

A neuropeptide that supports wakefulness and helps suppress non-REM sleep and REM sleep.

Primary brain region for regulating the timing of sleep-wake states.

Unintentionally falling asleep due to excessive daytime sleepiness. Also known as “sleep attacks.”

Brief, unintentional lapses into sleep, or loss of awareness.

A validated objective measure of the tendency to fall asleep in quiet situations.

People with narcolepsy type 1 have low levels of hypocretin.

Narcolepsy without cataplexy; the cause of narcolepsy type 2 is unknown.

A state of sleep characterized by slower-frequency, more synchronized neuronal activity and decreased muscle tone. Deep stages help to restore the body.

A multiparameter test that monitors physiologic signals during sleep; used as a diagnostic tool in sleep medicine.

A state of sleep characterized by low-amplitude, fast-frequency EEG, vivid dreams, and loss of muscle tone. Normally occurs 60-90 minutes after sleep onset. Also known as “paradoxical sleep.”

Brief loss of control of voluntary muscles with retained awareness at sleep-wake transitions.

Sleep-onset REM period.