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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 […]

Narcolepsy Advocates Attended Rare Disease Week

Narcolepsy Network sent 20 advocates to Washington, DC to be a voice for the narcolepsy community. Every year, the Rare Disease Legislative Advocates (RDLA), in coordination with […]

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 […]

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