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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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Narcolepsy Community

Do you or does someone you know have narcolepsy?

Know Narcolepsy provides important information and resources to help people living with narcolepsy, and their friends and family, understand symptoms and their impact, communicate with healthcare professionals, and create strategies and tips for managing the day to day with narcolepsy.

Links to Narcolepsy Education and Resources

Several groups are available that provide information, support and other resources for people living with narcolepsy, and for their family and friends.*

It helps being able to share and talk to someone about everyday struggles with narcolepsy.

Emily, 28 years old, living with narcolepsy with cataplexy

Narcolepsy Groups

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/

Wake Up Narcolepsy

An organization dedicated to supporting narcolepsy awareness and research to find a cure

www.wakeupnarcolepsy.org/

Sleep Groups

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/

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/

Project Sleep

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

www.project-sleep.com/

Rare Disease Groups

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/

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/

Other Narcolepsy Resources

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/User Fees/PrescriptionDrugUserFee/UCM402907.pdf

* The third-party sites listed above are for informational purposes only. Know Narcolepsy strives to provide the most useful and accurate resources available to people living with narcolepsy, but we do not endorse and are not responsible for the content found on these websites.

Performance of routine tasks without awareness or memory.

Difficulty focusing or concentrating.

Brief loss of muscle tone with retained awareness, often triggered by strong emotions.

Frequent shifts between different states of sleep and wakefulness at night.

The inability to stay awake and alert during the day; a constant need for sleep or unintentionally falling asleep.

A chemical in the brain that helps maintain wakefulness.

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

Dream-like events that occur when falling asleep. Called hypnopompic hallucinations if they occur when waking up.

A chemical in the brain that helps maintain wakefulness and prevent non-REM sleep and REM sleep from occurring at the wrong time.

Unintentionally falling asleep due to excessive daytime sleepiness; “sleep attacks.”

Restorative sleep state with decreased muscle tone.

Occurs at night and includes vivid dreams; muscles are not active to prevent people from acting out dreams.

Daytime and evening habits to improve sleep.

Brief total loss of voluntary muscle control when falling asleep or while waking up.

People with type 1 narcolepsy can be diagnosed by their cataplexy or low levels of hypocretin.

The cause of type 2 narcolepsy is unknown.