Rare Disease

Watch Now: How a Patient Helped Define A New Clinical Endpoint with FDA

How did I catch the “Advocacy Bug”? Why is the patient voice important? Watch my TED-style talk on the power of narcolepsy advocates working directly with FDA to build a brighter future. I gave this speech to over 300 clinical trial development experts in the pharmaceutical industry at the Disruptive Innovations Conference in Boston, MA on Sept. […]

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Narcolepsy PSA Project Sleep Founder Julie Flygare

I’m thrilled to share the narcolepsy public service announcement (PSA) created in collaboration with Honda. It was a huge honor to serve as a real voice and face of narcolepsy in this 30-second PSA, to air on TV in the next month. View here: Project Sleep’s Press Release: Bad Narcolepsy Joke Turns Honda into Awareness […]

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NARCOLEPSY NOT ALONE PROJECT SLEEP NEW WEBSITE 10

I’m so excited to share Project Sleep’s new NARCOLEPSY: NOT ALONE™ campaign website at: www.narcolepsynotalone.com. When I started this campaign last year, I never imagined it would become such an empowering international movement. Now, NARCOLEPSY: NOT ALONE™ is the world’s largest social media narcolepsy awareness campaign - setting a bold new precedent that narcolepsy is not a joke, but a real disorder […]

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narcolepsy advertisement public service announcement julie flygare narcoleptic cataplexy wide awake and dreaming author project sleep founder julie flygare

EXCITING UPDATE: Honda will create a 30-second Narcolepsy Awareness Public Service Announcement (PSA). I am beyond honored to serve as the spokesperson/talent in PSA and I’m currently working with Honda’s ad agency to develop the content.  This is an incredible turn-of-events in our inspiring community initiative thanks to each and every person who signed the petition and raised your voice. Big thanks to […]

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Today, I won the WEGO Health’s Geek Health Activist Award 2014. Wow, what a huge honor! My fellow finalists are so inspiring, I felt lucky just to be included in this group. Although I’ve never considered myself a “geek”, I do love keeping up with technology and social media trends to help put narcolepsy on the […]

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We may be RARE but we've got ROAR julie flygare narcolepsy spokesperson rare disease day 2014 global genes

“We may be RARE, but we’ve got ROAR.”-Julie Flygare Yes, I’m (awkwardly) quoting myself today. Happy Rare Disease Day! The rare disease community is a huge source of inspiration to me. Many struggles I thought were “only narcolepsy”, are quite universal for rare disease patients.  We have difficulty finding proper diagnosis. We have limited treatment options, which […]

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julie flygare narcolepsy

Last Friday, Jan. 31, I shared my inspirational narcolepsy story at UCLA Medical School. In one hour, we laughed, cried and changed perceptions about narcolepsy in future doctors. The medical students had recently studied narcolepsy in their curriculum – briefly learning the symptoms and watching a few YouTube videos. I was honored to add my patient […]

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Dear Diagnosis Blogathon

by julie on October 6, 2013

Dear Diagnosis Blogathon

If you could go back and speak to yourself on your diagnosis day, what would you say?   “Dear Diagnosis” is a Blogathon inviting all narcolepsy and chronic disease bloggers to write a letter to yourself on your diagnosis day. BLOGATHON PARTICIPANTS: An Unnatural Athlete – “Dear Jill” Norexin – “Dear Meaghan” Guest Post – […]

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In just six week, the Unite Narcolepsy’s patient survey has collected over 1,350 responses, including over 1,000 responses directly from patients diagnosed with narcolepsy. The survey results paint a powerful picture of the challenges facing the narcolepsy community – including extensive delays in diagnosis and many unmet medical needs. The Interim Survey Analysis will be shared […]

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Among challenges facing people with narcolepsy, securing health insurance to cover expensive medications can be a source of anxiety and fear. My personal experience with health insurance has been a roller-coaster but ultimately, I am thankful to have decent coverage now (knock on wood).  However, I’ve heard multiple stories recently (in news articles, at conferences and […]

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