Jun 08 2019
Unite with Us on Narcolepsy!
h in Blogs
This is an exciting time for the narcolepsy community! On September 24, 2013, the U.S. Food Drug & Administration (FDA) will hold a public meeting on narcolepsy as part of its Patient-Focused Drug Development Initiative. The meeting will gather information about narcolepsy directly from patients. This is the first event of its kind for narcolepsy and just the fourth the Agency has hosted. It’s a pivotal opportunity to communicate with decision makers who are ready to listen.
Wake Up Narcolepsy recognizes the importance of the FDA’s invitation and the opportunity it represents to shape the future of narcolepsy treatment. In response, we are spearheading a new initiative called Unite Narcolepsy to reach out broadly and help the community participate effectively.
Working with other community leaders, we’re developing new resources and programs to mobilize, educate, engage, and empower people whose lives are affected by narcolepsy – patients, loved ones, caregivers, and close friends. We’re ready to share a few of the new resources today, and we’ll be announcing more soon.
Outlined below are four ways you can take immediate action to help shape the future of narcolepsy treatment. Success depends on all of us joining hands and raising our voices for a brighter tomorrow.
Please join us!
Action Step 1: Take Our Survey.
Help FDA decision makers understand what it’s like to live with narcolepsy, and share your views on current therapies. We’ve compiled the FDA’s questions in a user-friendly format to make sure your perspective is represented. Click here to take the (anonymous) 30-item survey today.
Action Step 2: Register for the August 29 Webinar.
Learn about the Unite Narcolepsy initiative and all the ways YOU can be part of this landmark opportunity! This free one-hour “conference by web” program features Monica Gow, Executive Director of Wake Up Narcolepsy; and Julie Flygare, a well-known narcolepsy advocate. Join us at 2:00 PM (Eastern) on August 29. Click here to register. (Please note: participants’ privacy and identities will be protected.)
Action Step 3: Consider Attending the FDA Meeting — Live or by Webcast.
The September 24 meeting at FDA’s main campus in Silver Spring, Maryland, will offer several ways for patients and caregivers to share their experiences directly. The meeting is open to the public and free to attend. Advance registration by September 13 is required and space is limited. The meeting will be webcast live, and web participants will have options to get involved in the discussion, too. Click here for more details and registration links.
Action Step 4: Keep In Touch Via Facebook & Twitter.
If you’re active on Facebook or Twitter, “Like” our page, “Follow” our feed, and help share links and info. On Twitter, use #narcolepsy and #patientfocused to draw even more attention to our community and this unique collaborative initiative.
You’ll be hearing more from us in the coming days as we prepare together for this important event. Soon we’ll launch a Unite Narcolepsy website to keep you informed about the initiative, more webinar programs, coaching sessions, and regular reports on progress.
Monica Gow and other Wake Up Narcolepsy representatives will attend the FDA meeting. We’re already working closely with the Agency to ensure that this meeting reaches its full potential. Please act now on the four steps outlined above, and stay tuned for more news and ways to participate!