Rare Disease Day February 28, 2023
Rare Disease Day is about raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and supporters. This […]
January is Mental Wellness Month
What is mental wellness? According to the World Health Organization, mental wellness is “a state of well-being in which the individual realizes his or her own abilities, can cope […]
Suddenly Sleepy Saturday is March 12, 2022
Help Raise Narcolepsy Awareness with Suddenly Sleepy Saturday Suddenly Sleepy Saturday, also known as Narcolepsy Awareness Day, will take place on March 12, 2022. Narcolepsy Network encourages […]
A Reason to Give: Christen
Christen was diagnosed with narcolepsy in the 5th grade. She was fortunate to be diagnosed early and was able to avoid the typical stereotypes that come along […]
Virtual Annual Conference Session Recordings
10/2/21 Keynote presentation with Lois Krahn, MD 10/2/21 Medication Panel discussion 10/2/21 Narcolepsy 101 and Beyond with Charles Bae, MD 10/2/21 Behavioral Rhythms […]
Transition Leadership Announcement
The voice of people with narcolepsy is the heart of Narcolepsy Network. Since we announced leadership changes in February, we are continuing to deliver on current programs […]
An Update from the Board of Directors
Dr. Eveline Honig was with Narcolepsy Network for the last 16 years, aiding in its mission to provide education, support, and advocacy for patients and families impacted […]
Virtual Mini-Conferences
Join us for our next free Virtual Mini-Conference, which will be held on Saturday, April 24 at 2:00 PM ET/11:00 AM PT. The theme will be Finding Your […]
Update on the COVID-19 Vaccine
We asked Dr. Michael Thorpy, a member of our Medical Advisory Board from the Sleep-Wake Disorders Center in New York if people with narcolepsy should get the […]
Donate to Make Twice the Impact
Thanks to a few generous donors, if you make a donation before January 1, 2021, they will match your gift up to $10,000. This means your donation […]
Avadel Pharmaceuticals Announces Submission of New Drug Application for FT218 to the FDA
Avadel Pharmaceuticals plc announced the submission of its New Drug Application to the US Food and Drug Administration (FDA) for FT218, an investigational, once-nightly formulation of sodium […]
Mini-Conference Webinar: I Was Just Diagnosed: Now What?
Our second Virtual Mini-Conference webinar was held on December 5. The theme was I Was Just Diagnosed: Now What? and focused on topics for those starting out […]
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 […]
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 […]
Mini-Conference Webinar: Legal Issues and Narcolepsy
We kicked off our first Virtual Mini-Conference series on October 17, 2020. We will host a total of five virtual mini-conferences to cover the topics that were […]
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 […]
Narcolepsy Advocacy Program Workshop
Our first virtual Narcolepsy Advocacy Program Workshop was a huge success, training more than 30 youth and young adults. Narcolepsy Network will be hosting additional workshops throughout […]
PWN Spotlight: Juliana
Quarantined-Birthday Surprise: You Have NarcolepsyBy: Juliana Florez The week of March 16, 2020, was one I will never forget. The global pandemic made it to the tristate […]
Cooking Webinar
We launched a new cooking webinar series and it kicked off on Sunday, September 27, 2020. Chef Cortney Taraboi, a chef with narcolepsy who was recently featured […]
Celebrate World Narcolepsy Day 2020!
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.
Free Virtual Patient Education Day – August 29
Our final webinar in our Virtual Patient Education Day Webinar series took place on Saturday, August 29. Webinar Presentations Included: Your Voice Matters! How (and Why) to […]
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 […]
Free Virtual Patient Education Day for Teens and Young Adults
We held our second webinar in our Virtual Patient Education Day series on Saturday, July 11, 2020. The topics for this webinar focused on topics for teens […]
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 […]
Starting a Gratitude Journal
During our first Patient Education Day webinar, Dr. William Frye listed four strategies we can use to cope. He offered four strategies including using a coping wheel, […]
Free Virtual Patient Education Day – May 30
We held our first webinar in our Virtual Patient Education Day series on May 30, 2020. Webinar Presentations Included: Psychosocial Effects of Narcolepsy in the COVID-19 Crisis […]
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!
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 […]
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 […]
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 […]
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 additional […]
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 2019
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 Avadel Pharmaceuticals, is looking for subjects to participate in their clinical trial evaluating their once nightly sodium oxybate for the treatment of Excessive Daytime […]
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 […]
World Narcolepsy Day 2023
Friday, September 22nd is World Narcolepsy Day—a global day of awareness for narcolepsy that occurs each year. This year, there are two ways you can raise awareness […]
Idiopathic Hypersomnia 101
So what is Idiopathic Hypersomnia (IH)?IH is a rare sleep disorder and common symptoms include: Excessive Daytime Sleepiness (EDS) – a persistent sense of brain fog, lack […]
Clinical Corner: Patient Surveys & Focus Groups
What are they used for? Preliminary research through surveys and focus groups form the basis for answering clinical questions. The purpose varies from understanding the patient journey, […]
A message from the Board of Directors regarding the use of Narcolepsy Network’s name
For nearly 40 years, Narcolepsy Network has been a source of advocacy, education, and support to you. You often think of us when we host our renowned […]
We’re at SLEEP 2023 in Indianapolis
Amy Kant (our Transition Director) is attending the AASM SLEEP Conference in Indianapolis this week, with board members John Ensminger and Keith Harper. On Monday, Amy gave […]
2023 Annual Conference Registration is Open!
37 Years Strong For 37 years, Narcolepsy Network’s annual conference has been the go-to-place for hundreds of people across the country with Narcolepsy, Idiopathic Hypersomnia and supporters. […]
Clinical Update Webinar: Learn about a new FDA-Approved Treatment Option for Narcolepsy
Please join us on June 1st, 2023 at 5:30 p.m. (ET) for the first Clinical Update Webinar* in our 2023 series this year. In this session, you […]
Call for questions for Clinical Update Webinar
On May 1st, the FDA approved Lumryz™️, a new extended release sodium oxybate treatment for people with narcolepsy. On June 1, 2023 at 5:30 ET, Narcolepsy Network […]
Webinar: Tai Chi for Narcolepsy on April 27th
Join us Thursday, April 27 at 5:30pm ET! Tai chi instructor Stanwood Chang will lead the webinar with the history of tai chi, and its practical applications […]
Suddenly Sleepy Saturday 2023
So many proclamations to celebrate narcolepsy awareness – WOW! We had an amazing turn-out and a big shout out to all of you who contributed to the […]
