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Join Us for Our Next Virtual Support Group Meeting

Since we are not allowed to meet in person, we wanted to find a way to still “meet” as a support group. Everyone is welcome! We will […]

Support Us on #GivingTuesday

This year has been one to remember! While many of us are still struggling to find a new normal, we are proud of the programs we have […]

Snowmobiling for Narcolepsy

Snowmobile Narcolepsy Fundraiser

Positive Results from IH Phase 3 Study of Xywav

Jazz Pharmaceuticals plc announced positive top-line results from their Phase 3 double-blind, multicenter, placebo-controlled, randomized withdrawal study evaluating the efficacy and safety of an investigational use of […]

Mindfulness Meditation Program Study

If you have been diagnosed with narcolepsy and struggle with depression or anxiety, you may qualify for a study. The Behavioral Sleep Medicine Lab at Northwestern is […]

Virtual Mini-Conferences

We will be hosting five virtual mini-conferences to cover the topics that were planned for the in-person conference. Our second Virtual Mini-Conference will be held on December […]

FDA Approved the Expanded Use Of WAKIX® (pitolisant) for the Treatment of Cataplexy

Harmony Biosciences Holdings, Inc. (“Harmony”) announced that the US Food and Drug Administration (FDA) has approved WAKIX® (pitolisant) for the treatment of cataplexy in adult patients with […]

Youth Ambassadors and Co-Chair Nominated for Award

Youth Ambassadors Brandon Beck and Caroline Arnette and Youth Ambassador Co-Chair Cynthia Zorn have been nominated for the 2020 RARE Champion of Hope Award by Global Genes, […]

Videos of Your Cataplexy

Do you have videos of what your cataplexy looks like and would be willing to share? Marilyn Swick and Dr. Todd Swick have been working in sleep […]

NN Awarded the “Patients at the Heart” Grant

We are grateful to Harmony Biosciences for awarding us the Patients at the Heart grant. This will allow us to reach more people with narcolepsy virtually. So […]

RESTORE Study of FT218

If you or your child are over 16 and have been diagnosed with narcolepsy, you may qualify for the RESTORE research study. Managing your narcolepsy symptoms is […]

Youth & Young Adult Ambassador Workshop

We will host another Youth Ambassador Virtual Workshop in early 2021 during the interim of the COVID-19 restrictions. Due to the effects of COVID-19, Narcolepsy Network’s Youth Ambassador In-Person […]

Cooking Webinar on September 27

We are excited to launch a new cooking webinar series! The first webinar will take place on September 27 at 2:00 PM ET. Chef Cortney Taraboi, a […]

Celebrate World Narcolepsy Day!

Celebrate World Narcolepsy Day by sharing your story!

Board Member is Featured in a Video Series

Our Board Member, Dr. Luis Ortiz, is featured in a video series about doctors with narcolepsy.

Jazz Pharmaceuticals Announces FDA Approval of Xywav

Jazz Pharmaceuticals plc announced that the US Food and Drug Administration (FDA) approved Xywav™ (calcium, magnesium, potassium, and sodium oxybates) oral solution for the treatment of cataplexy […]

A New Program that Connects Children with Narcolepsy

blished a new program that connects children with narcolepsy! Children, ages 8-13, who have been diagnosed with narcolepsy and their parent, are invited to join us virtually for a time of support, caring, and fun.

A Statement of Solidarity

Hello friends, 2020 has been a rough year – it has been, socially, economically, and emotionally trying. The global pandemic has claimed over 100,000 American lives, and […]

New Narcolepsy Study

The Sparkle 1501 Study for Narcolepsy Further development is needed in treating narcolepsy, a sleep disorder that disrupts the brain’s ability to regulate sleep-wake cycles, causing persistent […]

Executive Director Featured on NeurologyLive

At the beginning of March, our Executive Director, Dr. Eveline Honig, participated on a panel that discussed narcolepsy. The panel was assembled by NeurologyLive™, a platform that […]

Focus Group Participants Needed to Develop a Pediatric Narcolepsy Patient-Reported Outcomes Scale (PN-PROS)

Currently, there is no tool to assess the symptoms of narcolepsy that most significantly impact the daily functioning of children with narcolepsy.  This study hopes to develop […]

Avadel Pharmaceuticals Announces Results from its Phase 3 Trial of Once-Nightly FT218

Avadel Pharmaceuticals plc (Nasdaq: AVDL) announced positive topline data from its pivotal Phase 3 REST-ON trial assessing the safety and efficacy of FT218, an investigational, once-nightly formulation […]

Avadel Completes the REST-ON Phase 3 Trial of FT218

Avadel Pharmaceuticals plc, who is developing FT218, an investigational, once-nightly formulation of sodium oxybate for the treatment of excessive daytime sleepiness and cataplexy in patients with narcolepsy, […]

Jazz Pharmaceuticals Announce the FDA Acceptance of New Drug Application for JZP-258

Jazz Pharmaceuticals plc announced that the US Food and Drug Administration (FDA) accepted for filing with Priority Review the company’s New Drug Application seeking marketing approval for […]

Introducing the Youth Ambassador Advisory Team

Caroline Arnette has been selected as Lead Youth Ambassador. She was the first lead YA to be named to the Youth Ambassador Program. Caroline has demonstrated the […]

Aid for Patient and Community-Based Organizations Impacted by Coronavirus

We, along with 214 other organizations, wrote to Speaker Pelosi and Leaders McConnell, McCarthy, and Schumer to urge them to include nonprofit patient support community-based organizations in […]

A Message from Harmony Biosciences about WAKIX®

Harmony Biosciences, LLC released this important message about WAKIX® (pitolisant) during this critical time with the spread of COVID-19: “…we are working diligently to ensure the continuity […]

We Are Here to Support You

“We must be willing to get rid of the life we’ve planned, so as to have the life that is waiting for us.” – Joseph Campbell To […]

What to Expect During Rare Disease Week

General Tips and Notes Talk to other advocates. Push yourself outside your comfort zone. Make connections. Keep in touch with the people you meet. Rare Disease Week […]

Youth Ambassador Honored at National Conference

The Council for Exceptional Children recognizes children and youth with exceptionalities “who have demonstrated their determination and achievements in multiple ways” with their Yes I Can Awards. […]

Join Us in Washington, DC for Rare Disease Week!

Apply Now → What is Rare Disease Week? Rare Disease Week on Capitol Hill is a free week-long DC event hosted by the Rare Disease Legislative Advocates (RDLA) and coordinated by The Everylife Foundation for Rare Diseases. The RDLA brings together over 500 […]

One-Day Narcolepsy Seminar in St. Petersburg, Florida

Join us for our next one-day narcolepsy seminar in St. Petersburg, Florida! Meet other people with narcolepsy and their supporters, learn about treatments, and hear the latest […]

Year in Review

As we look towards 2020, we wanted to take a moment to highlight some of what we’ve been up to in 2019. We couldn’t have done it […]

Axsome Therapeutics Announces AXS-12 Achieves Primary Endpoint in CONCERT Phase 2 Trial in Narcolepsy

Axsome Therapeutics, Inc. announced that AXS-12 (reboxetine) met the prespecified primary endpoint and significantly reduced the number of cataplexy attacks as compared to placebo in patients with […]

Support Us on #GivingTuesday

On December 3, 2019, Narcolepsy Network will be participating in #GivingTuesday. The Tuesday after Thanksgiving is designed as a day of global giving to celebrate generosity and kindness. Your gift […]

Avadel Pharmaceuticals Achieves Enrollment Target in REST-ON Phase 3 Pivotal Trial of FT218

Avadel Pharmaceuticals announced that it has achieved its patient enrollment target of 205 patients in the REST-ON Phase 3 clinical trial for FT218, an investigational, once-nightly formulation […]

Two Clinical Studies on Pitolisant Published

Harmony Biosciences published two clinical studies on WAKIX® (pitolisant). These studies evaluated the long-term safety and efficacy of the medication, as well as its human abuse potential. […]

Meet #TeamNarcolepsy

Narcolepsy Network has been selected as an Official Charity Partner for the 2019 TCS New York City Marathon. We will join more than 350 official charity partners in […]

Study on the Mind-Body Approach to Improve Health-Related Quality of Life for PWNs

Narcolepsy Network Medical Advisory Board Member Dr. Jason Ong and his team at the Center for Circadian and Sleep Medicine at Northwestern University Feinberg School of Medicine […]

One Day Narcolepsy Seminar in NYC

Join us for our first one day narcolepsy seminar in New York City! These seminars will not replace the interactions at the annual conference, but will provide […]

New Survey Highlights the Prevalence of Misinformation and Misperception about Narcolepsy

We still have work to do in order to break down narcolepsy’s stereotypes. We are committed to bringing awareness about this disorder. Here are some of the […]

Celebrating World Narcolepsy Day

Thank you to everyone who sent in stories for World Narcolepsy Day. We were able to share your stories on social channels all day long! Through these […]

Jazz Pharmaceuticals Presents Positive JZP-258 Phase 3 Study Data at World Sleep 2019

Jazz Pharmaceuticals plc announced positive data from the Phase 3 study of its investigational medicine, JZP-258, for the treatment of cataplexy and excessive daytime sleepiness in adults […]

Administration’s Deferred Action Policy

The National MPS Society, California Action Link for Rare Diseases (CAL RARE) and EveryLife Foundation asked patient organizations to sign on to a letter that asked the […]

2019 Conference Schedule Now Available

We will have a jam-packed weekend for PWNs and their supporters at this year’s conference, taking place in Albuquerque, New Mexico on October 25-27. Check out the […]

Celebrate World Narcolepsy Day

Narcolepsy Network Partners with Patient Advocacy Organizations to Celebrate Global Narcolepsy Awareness Day World Narcolepsy Day will Take Place on September 22, 2019 Narcolepsy Network, the leading […]

In Memoriam: Dr. Christian Guilleminault

Dr. Christian Guilleminault passed away on July 9, 2019 from complications due to metastatic prostate cancer. He is survived by his wife and two sons.  Dr. Guilleminault […]

In Memoriam: Dr. Feldman

We are saddened to hear that one of our Medical Advisory Board Members passed away on Friday, June 21. Dr. Neil Turk Feldman passed away after complications […]

Research Study for Adults with Narcolepsy – Share Your Story

People with narcolepsy face challenges and problems every day – symptoms and problems are not always recognized or understood by health care providers or members of the […]

New Study for Children with Narcolepsy

Has your child been diagnosed with narcolepsy or have you taken your child to the doctor where the main reason for the visit was to address the […]

Now Accepting Applications to be a 2019-2020 Youth Ambassador

Narcolepsy Network (NN) is now accepting applications for the Youth Ambassador Program (YA). This is a national program designed to train promising young members of NN to […]

Clinical Trial for the Treatment of Excessive Daytime Sleepiness and Cataplexy

Axsome Therapeutics is pleased to announce a new clinical trial of an investigational oral medication, AXS-12, for the treatment of excessive daytime sleepiness and cataplexy associated with […]

We Are Running the 2019 TCS New York City Marathon

We are excited to announce that Narcolepsy Network will once again be running the TCS New York City Marathon this fall as an Official Charity Partner! Last […]

Narcolepsy Advocates Went to Washington for Rare Disease Week

In year’s past, Narcolepsy Network was able to send our Executive Director or a board member or two to Rare Disease Week on Capitol Hill. This year, […]

New Membership Levels and Benefits

We are making some changes to our membership program in 2019, with the introduction of three new levels of membership (including a much-requested family membership). In this […]

NN Met with FDA Representatives

Several Narcolepsy patient advocates, along with Narcolepsy Network’s President Dr. Mark Patterson and Executive Director Dr. Eveline Honig went to the Food and Drug Administration (FDA) to […]

We Are Running the 2018 TCS New York City Marathon

Hello friends, We’re excited to announce that Narcolepsy Network has been selected as an Official Charity Partner for the 2018 TCS New York City Marathon. Narcolepsy Network […]

Let Your Voice Be Heard About Your Healthcare

As Congress debates major healthcare legislation, this is an important opportunity for people with narcolepsy (PWNs) to make our voices heard. Many of us would be struggling […]

Your Support Group on Meetup

Narcolepsy Network has created a centralized website for narcolepsy support groups on Meetup.com that can be found here. What is Meetup? It is software built specifically to […]

Run for #TeamNarcolepsy

Have you ever wanted to run a marathon? Do you have narcolepsy, or know someone who does? Have you always wanted to do something big to support […]

Participants Are Needed for Clinical Trial

Flamel, part of the Avadel Pharmaceuticals, is looking for subjects to participate in their clinical trial evaluating their once nightly sodium oxybate for the treatment of Excessive […]

Help Researchers Learn More About Narcolepsy

The Nexus Narcolepsy Registry is an effort by the narcolepsy research and advocacy communities in collaboration with Jazz Pharmaceuticals that will collect de-identified data from a large […]