In October 2012, our - then 5 yr old - son Vand'n was given the H1N1 vaccine. 6 weeks later, he developed Narcolepsy because of the vaccine. This is his journey and a collection of information we have found helpful. We are hoping to educate other parents about this side effect and hope to connect with other families dealing with the same thing in order to share resources and support. Click here to begin and learn where this all started.

Friday, August 30, 2013

HELP OUR NARCOLEPSY COMMUNITY!!!

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.
YOU CAN HELP BY...
     TAKING THE SURVEY:  People with narcolepsy AND loved ones are invited to take this anonymous confidential survey, based on the FDA’s questions to capture the variations in patients’ experiences (about 15-20 mins to complete).
Take survey here!

YOUR CAN GET INFORMED BY....
    JOINING THE WEBINARS:  Check in with Julie here. She will have the link and updated information on her page as it becomes available.  The webinars are offered on each Thursday leading up to the FDA's meeting.

YOU CAN ATTEND THE FDA's MEETING...live or by webcast Register Here
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