advocacy

Hello from SLEEP 2013!

by julie on June 8, 2013

This week, I attended and spoke at the APSS SLEEP Meeting, a.k.a. “the Superbowl of Sleep.” Thousands of sleep researchers and clinicians from all over the world attended this meeting on June 1-5 in Baltimore, MD. On Wednesday, I participated on a pediatric narcolepsy panel hosted by Dr. Judith Owens with pediatric specialists, other patients […]

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Representing People with Narcolepsy at the FDA

by julie on October 26, 2012

Yesterday, I had the extraordinary honor of visiting the Food and Drug Administration (FDA) to urge them to include Narcolepsy in the ground-breaking Patient-Focused Drug Development initiative.  I was #19 to sign up on the disease nomination speaker list, even though I arrived 15 minutes before registration technically opened. The large conference room quickly filled […]

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The Food and Drug Administration (FDA) has nominated “narcolepsy” for a groundbreaking new patient-focused drug development initiative. Only 20 diseases will be chosen. Please join me in urging the FDA to select “narcolepsy” for this important effort.  About the FDA Initiative:”Narcolepsy” is one of 39 disease areas nominated for a new FDA initiative to better inform the FDA’s drug and […]

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