FDA Narcolepsy Patient Meeting

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 […]


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 […]


Urgent: If you are planning to attend FDA narcolepsy meeting on 9/24 by WEBCAST, you must register by 5:00 p.m. ET today (9/13/13). I highly encourage all people with narcolepsy/IH and loved ones around the world to attend this webcast. Let’s show our community’s strength and support!   Act now and reserve your spot: http://patientfocusednarcolepsy.eventbrite.com/. […]


Please join me for Unite Narcolepsy’s Webinar 3, “Harmony: Putting Your Best Voice Forward” this Wednesday, Sept. 11 at 2:00 p.m. ET. Register here. I will co-lead with Kim McCleary. Communicating about narcolepsy can be overwhelming. Where to begin? What to highlight? But have no fear, Unite Narcolepsy is here! Nothing excites me more than fine-tuning communication skills […]


In less than two weeks, Unite Narcolepsy has collected 961 survey responses. Please help us reach 1,000 by starting survey here – people with narcolpesy/IH and thier loved ones around the world are invited to participate!  To be honest, I can’t believe we are so close to 1,000. Setting this goal, I thought maybe we’d […]


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This Thursday, Aug. 29, 2013 at 2:00 p.m. (EDT), Unite Narcolepsy will host the first ever webinar for the narcolepsy patient community.  The webinar is free and open to anyone who’d like to participate.  Register here! This is the first in a series of four webinars to help narcolepsy advocates navigate the upcoming FDA Meeting on Sept. 24, 2013.  Thursday’s topic will […]


FDA’s Narcolepsy Patient Focused Meeting on September 24, 2013 is quickly approaching. This ground-breaking opportunity puts narcolepsy advocates in the spotlight – educating decision makers and helping to shape the future of narcolepsy treatments. Partnering with community leaders in the “Unite Narcolepsy” initiative, I am thrilled to share exciting new tools and resources! Take the Survey: […]


Interested in shaping future narcolepsy drug development? Here’s your chance! On September 24, 2013, FDA will host the Narcolepsy Public Meeting to obtain patients’ perspectives on the impact of narcolepsy on daily life as well as the available therapies for narcolepsy. This past year, we worked together to secure this tremendous opportunity with FDA. The September 24 meeting […]


I’m excited to share, “Narcolepsy Patients Hope FDA Attention Will Spur Drug Research, Shed Misperceptions” by Brenda Sandburg, The Pink Sheet, May 13, 2013. [View/Download PDF] This great article describes narcolepsy’s inclusion in FDA’s Patient Focused Drug Development Iniative. Thank you Ms. Sandburg and the Pink Sheet for featuring narcolepsy in your publication! For more posts about […]

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I’m thrilled to release my 15th narcolepsy awareness video providing an update on narcolepsy’s placement in FDA’s Patient Focused Drug Development Initiative (PDFFI). For more posts about the FDA Initiative, click here. Thank you for checking out my video! Big thanks to Alex Withrow for his expert video production.   Watch full video series Watch Video #19: […]