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Narcolepsy Advocacy and Support Groups

Access to credible information can help improve understanding of narcolepsy symptoms and their impact.

These organizations can help you find a support group or learn more about living with a rare disorder.

Connect With the Narcolepsy Community

There are several groups and organizations that can provide information, support, and more to people living with narcolepsy and their loved ones.

Narcolepsy Network Logo

Narcolepsy Network

Founded in 1986, Narcolepsy Network is a member-led community organization that works to educate, empower, and connect people impacted by narcolepsy.

Through the lens of advocacy, education, awareness, and support, Narcolepsy Network delivers programs and resources in the form of clinical updates and research, webinars, support groups, and advocacy opportunities. Narcolepsy Network also hosts an annual conference offering up-to-date information on clinical research, therapies, and lifestyle hacks, as well as networking and support.

Click here to learn more about Narcolepsy Network.

Click here to join Narcolepsy Network's email list.

Click here to register for one of Narcolepsy Network's virtual support groups.

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Wakeup Narcolepsy Logo

Wake Up Narcolepsy

Wake Up Narcolepsy is 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.

WUN offers free, targeted online support groups to individuals with narcolepsy and their families worldwide. Their programs are designed to bring together individuals who have been affected by the diagnosis of narcolepsy and provide the support and community necessary to thrive. Find a weekly online support group. Find a weekly online support group.

There are several other resources and events supported by WUN, including education day videos and webinars, podcasts, fundraisers, and awareness campaigns. Check out all the supportive resources WUN offers.

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Project Sleep Logo

Project Sleep

Project Sleep is an organization raising awareness about sleep health and sleep conditions, including programming to empower and support people with narcolepsy.

Project Sleep’s Rising Voices program helps foster a new generation of patient-advocates by encouraging people to share their personal stories to improve public understanding of sleep disorders. Discover how to get involved.

World Narcolepsy Day (WND), occurring every year on September 22, is dedicated to raising awareness of narcolepsy on a global scale, uniting the international narcolepsy community to inspire action, increase public knowledge, and elevate the voices of the 3 million people living with narcolepsy worldwide. Learn more here.

Project Sleep also hosts the Narcolepsy Nerd Alert series, where fellow #NarcolepsyNerds can explore aspects of the narcolepsy experience, contemplate bold questions, and learn from each other. Live broadcasts happen on the last Wednesday of every month. Check out videos and toolkits from Narcolepsy Nerd Alert.

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Day4NAPS

A platform with a mission to raise narcolepsy awareness by sharing stories of people living with narcolepsy and fundraising events happening worldwide. Get inspired and find ideas for your own narcolepsy awareness events.

Other Educational Resources

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

National Sleep Foundation Logo

National Sleep Foundation

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

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Global Genes Logo

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.

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NORD Logo

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.

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*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.

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Vivid dream-like experiences that occur while falling asleep or while waking up.

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

People with type 1 narcolepsy can be diagnosed by their cataplexy or low levels of hypocretin (also known as orexin).

The cause of type 2 narcolepsy is unknown.

Restorative sleep state with decreased muscle tone.

Daytime and evening habits to improve sleep.

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

Also known as orexin, hypocretin is a naturally occurring 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.”

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

A naturally occurring chemical in the brain that helps maintain wakefulness.

Vivid dream-like experiences that occur while falling asleep or while waking up.

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

Difficulty focusing or concentrating.

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

Performance of routine tasks without awareness or memory.