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Advancements in the understanding of narcolepsy are happening. Be the first to know. Sign Up Now

Advancements in the understanding of narcolepsy are happening. Be the first to know.

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Tools & Resources for You and Your Patients

Know Narcolepsy provides education and resources to help healthcare professionals and their patients communicate and stay informed.

Educational Resources

Resources to help educate about sleep disorders and facilitate discussion with your patients.

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.


View or download a PDF of survey highlights to share with your patients or colleagues.

Narcolepsy 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

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.
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

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

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/

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

Project Sleep

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

www.project-sleep.com/

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.

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.

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.