Advancements in the understanding of narcolepsy are happening. Register for updates »

Advancements in the understanding of narcolepsy are happening. Register for updates »

Narcolepsy Resources for Your Patients

Share these educational resources and organizations with your patients during their appointments.

Patient Resources

Know Narcolepsy has developed tools to help your patients better understand their symptoms and talk about the impact of the disorder.

Science of Narcolepsy Handout

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

Download PDF

Science of Narcolepsy Handout

Science of Narcolepsy Phone Icon

The 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. Share the results with your patients or colleagues.

Download PDF

The Know Narcolepsy® Survey

The Know Narcolepsy Surveyy Phone Icon

Know What to Expect From Telemedicine

Share this checklist with your patients with narcolepsy to help them get the most out of their appointments.

Download PDF

Know What to Expect From Telemedicine

Telemedicine Guide Phone Icon

*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.1 The Narcolepsy Network collaborated on the patient survey.

KnowNarcolepsy.com

Know Narcolepsy provides educational information and resources for people living with narcolepsy to help them understand the impact of their symptoms and better manage day to day life with narcolepsy. Encourage your patients with narcolepsy to explore this online resource.

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.

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

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.

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

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.

Patient Support Organizations

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

Global Genes Logo

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

P50 Narc Network Logo 052218 532Pm

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

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

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

Wake Up Logo

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.

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; nearly 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 sometimes frightening dream-like events that occur when falling asleep.

Also known as orexin. 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 living 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 fast-frequency, desynchronized activity on 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.

The VLPO as well as the median preoptic nucleus (MnPO) are located in the hypothalamus and contain essential neurons for promoting non-REM sleep. These neurons project to all wake-promoting regions to inhibit wakefulness and promote non-REM sleep during the night.8,11 Neurons in the extended VLPO mediate the promotion of REM sleep by inhibiting certain wake-promoting neurons that suppress REM sleep.8