FDA Narcolepsy Patient Meeting

Speaking at Patients as Partners Conference

by julie on March 26, 2015

julie flygare speaker project sleep founder narcolepsy patient advocate reduced

On Monday, March 16, 2015, I was honored to speak at Patients as Partners, a conference dedicated to finding solutions on how to truly partner with patients in clinical trials. Representatives from pharma, PCORI, CTTI, FasterCures, FDA, patient advocates and patients all came together in Philadelphia for this important discussion. Many role-models and friends were in […]

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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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Watch: Disruptive Innovations Interview on Narcolepsy, FDA & Project Sleep

I’m thrilled to share my Disruptive Innovations interview with the Conference Forum’s Exec. Director, Valerie Bowling. This fun discussion on narcolepsy, FDA and Project Sleep was filmed before my speech at the TCF’s Disruptive Innovations Conference in Boston, MA on Sept. 11, 2014. Thank you so much to Valerie and the Conference Forum’s team for […]

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On Sept. 11, 2014, I will present a TED-style talk at “Disruptive Innovations” in Boston, MA.  My 12-minute speech will discuss: “How a Patient Helped Define a New Clinical Endpoint in Narcolepsy: Diagnosed with narcolepsy with cataplexy in 2007, award-winning author and founder of Project Sleep, Julie Flygare, shares her story on how she helped define a […]

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Julie Flygare narcolepsy Book Signing

This weekend, I will be speaking and signing books at the 28th Annual Narcolepsy Network Conference in Atlanta, GA. This is always an exciting weekend for me – as I get to see old friends and meet many new friends! Books: I’m offering a discount conference rate on personalized signed copies of Wide Awake and […]

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Join Us: FDA Initiative Wrap-Up Webinar

by julie on October 8, 2013

FDA narcolepsy wrap up webinar

The FDA meeting was an amazing experience. Let’s re-cap and look ahead to the future! What: Unite Narcolepsy Wrap Up WebinarWhen: Thursday, Oct. 10, 2013 at 2:00 p.m. ETDescription: We’ll recap what happened at the FDA meeting, review ways that patients and other stakeholders can offer their perspective to the agency, and look ahead at […]

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FDA Narcolepsy Meeting Video – Watch Now!

by julie on October 4, 2013

FDA NARCOLEPSY MEETING WATCH NOW VIDEO

The Webcast Recordings of FDA’s Narcolepsy Meeting on Sept. 24, 2013 are now available. Watch Here: PART 1 – Opening to Break PART 2 – Break to Closing Get Involved: REM Runner’s Recap and Photos Take the Unite Narcolepsy Survey Submit Comments to the FDA Docket

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Julie Flygare Narcolepsy FDA Meeting

“We are a bunch of deeply motivated people doing everything in our power to live full lives.”   – Saraiah, Narcolepsy Advocate Leading up to the FDA Narcolepsy Meeting on Sept. 24, 2013, I traveled to FDA’s campus four times, wrote 15 blog posts, co-led the Unite Narcolepsy initiative, co-presented webinars, wrote FAQs, and coached panelists – yet nothing […]

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Shining a Spotlight on Narcolepsy at FDA

by julie on September 24, 2013

julie flygare narcolepsy spotlight

Today’s the day that narcolepsy shines in the spotlight!  In a few hours, I will be at FDA for the Narcolepsy Patient Focused Meeting. Joining me will be over 100 narcolepsy patient advocates in-person and over 500 more via webcast around the world. We will share our stories and help FDA better understand the REAL […]

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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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