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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

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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 »

Rethinking Narcolepsy: Unrecognized Symptoms and the Underlying Neuronal Processes

Rethinking Narcolepsy: Unrecognized Symptoms and the Underlying Neuronal Processes

This presentation, given by Drs. Michael Thorpy and Richard Bogan at SLEEP 2019, reviews the wake-promoting neuronal systems in the brain and the complementary roles of hypocretin and histamine in promoting and stabilizing wakefulness. 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 Process Behind Stable Wakefulness

The Underlying Neuronal Process Behind Stable Wakefulness

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

Histamine at a Glance

Histamine at a Glance

Explore a critical “control center” for sleep-wake state stability and the role of histamine in promoting and stabilizing wakefulness. View PDF »

Know Narcolepsy Resources

Know Narcolepsy provides tools to help better understand your symptoms and their impact. Download our educational resources and connect with us on social media.

Quick Guide - Quality of Life_Assessment

A Quick Guide for Evaluating the Impact of Narcolepsy

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


Download PDF

Know your narcolepsy symptoms

Narcolepsy Assessment Tool

Assess how narcolepsy may be interfering with your life and share the results with your healthcare provider. Get started »

Science of Narcolepsy

Science of Narcolepsy

Learn about the chemicals in the brain that play a role in sleep and wakefulness and how they affect narcolepsy. Download PDF »

Know Narcolepsy Survey

Know Narcolepsy Survey*

Learn about the impact of narcolepsy and the results from the Know Narcolepsy Survey. Download PDF »

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

www.sleepeducation.org
www.aasm.org

The Narcolepsy Institute

A resource providing informational, referral, and psychosocial support to individuals with narcolepsy and their families

www.narcolepsyinstitute.org

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

www.healthysleep.med.harvard.edu/narcolepsy

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National Sleep Foundation

A non-profit organization dedicated to improving health and well-being through sleep education and advocacy

www.sleepfoundation.org
www.sleep.org

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

www.med.stanford.edu/narcolepsy.html

Information for Your Patients

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

Aahs

American Alliance for Healthy Sleep

A membership organization dedicated to partnering patients, providers, and the public to improve the lives of patients with sleep disorders and highlight the importance of healthy sleep

www.sleepallies.org

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Global Genes: Allies in Rare Disease

Global Genes is a global patient advocacy organization that focuses on connecting, empowering and inspiring the rare disease community

www.globalgenes.org

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

www.narcolepsynetwork.org/

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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

www.rarediseases.org/

FDA Voice of the Patient: Narcolepsy

A report from the US Food and Drug Administration’s patient-focused drug development initiative

www.fda.gov/downloads/ForIndustry/UserFees/PrescriptionDrugUserFee/UCM402907.pdf

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Project Sleep

A non-profit organization raising awareness about sleep health and sleep conditions

www.project-sleep.com/

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.

www.wakeupnarcolepsy.org/

*The Know Narcolepsy Survey is a three-party survey of 1,654 U.S. adults including those with narcolepsy (n=200), the general public (n=1,203), and physicians (n=251) currently in clinical practice who have treated patients with narcolepsy in the last two years. The survey was conducted online in March, April and August 2018, respectively, by Versta Research on behalf of Harmony Biosciences, LLC. The Narcolepsy Network collaborated on the patient survey.

Performance of routine tasks without awareness.

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

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 inappropriate transitions between states of sleep and wakefulness.

The inability to stay awake and alert during the day.

A neurotransmitter that supports wakefulness. The TMN is the only source of histamine in the brain.

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

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

A neuropeptide that supports wakefulness and helps control 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.

Brief, unintentional lapses into sleep or loss of awareness.

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

A state of sleep when muscle tone is decreased. Deep stages help to restore the body.

Overnight study used to diagnose sleep disorders by monitoring sleep stages and cycles to detect disruptions of a normal sleep pattern.

Normally occurs at night and includes vivid dreams. Also known as “paradoxical sleep.”

Daytime and evening habits and routines to help improve nighttime sleep.

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

Sleep-onset REM period.

People with type 1 narcolepsy have low levels of hypocretin.

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