Narcolepsy Support Organizations

Find narcolepsy support groups and learn more

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 US-based 501(c)(3), 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.

Visit Narcolepsy Network’s website to learn more.

Join Narcolepsy Network’s email list.

Register for one of Narcolepsy Network’s virtual support groups.

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.

Wake Up 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.

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.

Day4NAPs Logo

A Day for Narcolepsy Awareness Projects (Day4NAPs)

Day4NAPs is 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.

Harmony Biosciences is not responsible for the content of third-party websites.

Finding Support in the Narcolepsy Community

Watch other people living with narcolepsy share their experience with how they found support within the narcolepsy community.

Watch more

Indications and usage & Important Safety Information

Important Safety Information

Do not take WAKIX if you are allergic to pitolisant or any ingredient in WAKIX, or if you have severe liver disease.

Tell your healthcare provider about all your medical conditions, including if you have heart rhythm irregularities, were born with a heart condition, or the levels of electrolytes in your blood are too high or too low. WAKIX has an effect on the electrical activity of the heart known as QT/QTc prolongation. Medicines with this effect can lead to disturbances in heart rhythm, which are more likely in patients with risk factors such as certain heart conditions, or when taken in combination with other medicines that affect QT. Tell your healthcare provider about all the other medicines you take.

The risk of QT prolongation may be greater in patients with liver or kidney disease. WAKIX is not recommended in patients with end-stage kidney disease.

The most common side effects seen with WAKIX were insomnia, nausea, and anxiety. Other side effects included headache, upper respiratory infection, musculoskeletal pain, heart rate increased, and decreased appetite. These are not all the possible side effects of WAKIX. Tell your healthcare provider about any side effect that bothers you or that does not go away.

Tell your healthcare provider about all the medicines you take or plan to take, including prescription and over-the-counter medicines. Some medicines can increase the amount of WAKIX that gets into your blood and some medicines can decrease the amount of WAKIX that gets into your blood. The dosage of WAKIX may need to be adjusted if you are taking these medicines.

WAKIX can also decrease the effectiveness of some medicines, including hormonal birth control methods. You should use an alternative non-hormonal birth control method during treatment with WAKIX and for at least 21 days after discontinuation of treatment.

Tell your healthcare provider if you are pregnant or planning to become pregnant. There is a pregnancy exposure registry that monitors pregnancy outcomes in women who are exposed to WAKIX during pregnancy. You are encouraged to enroll in the WAKIX pregnancy registry if you become pregnant while taking WAKIX. To enroll or obtain information from the registry, call 1-800-833-7460.

The safety and effectiveness of WAKIX have not been established in patients less than 18 years of age.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. You can also report negative side effects to Harmony Biosciences at 1-800-833-7460.

Indications and Usage

WAKIX is a prescription medicine used to treat excessive daytime sleepiness (EDS) or sudden onset of weak or paralyzed muscles (cataplexy) in adults with narcolepsy.

Please see Full Prescribing Information.

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