FDA Narcolepsy Patient Meeting

unite narcolepsy FDA deadline sept 13

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/. […]

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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 […]

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narcolepsy is here and it matters

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 […]

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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: […]

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FDA NARCOLEPSY PUBLIC MEETING PATIENT FOCUSED DRUG DEVELOPMENT September 24 2013

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 […]

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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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narcolepsy video 15 narcolepsy fda patient focused drug development initiative julie flygare

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: […]

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fda logo

I’m thrilled to announce that NARCOLEPSY has been selected for FDA’s Patient-focused Drug Development Initiative (PFDDI).  Narcolepsy has been selected as one of the initial 12 disease areas for individual evaluation to be addressed in FY 2013 – FY 2015. We did it!   I testified in person and led the campaign for online comments. […]

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Julie Flygare Represents Narcolepsy at FDA

by julie on March 3, 2013

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On Wednesday, Feb. 27, 2013, I attended an update meeting on FDA’s Patient Focused Drug Development Initiative. Last fall, I led the campaign urging FDA to include narcolepsy in this 20 disease innovative program (read more here). I testified at the FDA hearing and hundreds of narcolepsy advocates sent in comments of support. FDA received […]

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