Tuesday, August 27, 2013

A Call To Action!

On Sept. 24, 2013, the Food and Drug Administration (FDA) will conduct the Narcolepsy Patient Focused Meeting to better understand the patient perspective on narcolepsy. This is a unique opportunity for people with narcolepsy and their caregivers to help shape the future of narcolepsy treatment, with FDA decision-makers eagerly listening!

Unite Narcolepsy is conducting an anonymous survey to make sure everyone’s experience with narcolepsy is represented. There will also be weekly webinars leading up to the meeting - the first will be on Aug. 29. Details & registration here

Narcolepsy affects each of us differently, so we need many voices to capture our community’s full experience. So please,  reach out to anyone you know who has any form of Narcolepsy or loves a Person With Narcolepsy (PWN) and ask them to please give their input by completing the survey

Curious about more details on the meetings and how you or a loved one can participate? Visit Julie Flygare's website info here (http://julieflygare.com/fda-narcolepsy-survey/)

Speaking of Julie, she is a wonderful Narcolepsy advocate who has written an amazing book about her narcoleptic experience. It's one of those hard-to-put-down books and is a great account of what having narcolepsy is like and how elusive diagnosis can be. I invite you to check it out here. You'll enjoy it! 

1 comment:

REM Runner said...

Thank you so much Jill for posting about the Unite Narcolepsy initiative to educate the FDA on what matters most for people with narcolepsy. It's a proud day to be a person with narcolepsy! Your friend, Julie