Help FDA Understand Narcolepsy Today – Take Survey, Webinars & More!

By julie | August 26, 2013 |

unite narcolepsy logo fda

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!

  • Screen shot 2013-08-26 at 5.08.22 PMTake 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). Start survey here. 
  • Register for the Aug. 29 Webinar: Unite Narcolepsy’s first one-hour webinar will take place on Thursday August 29, at 2:00 p.m. (EDT). Please join us for this exciting “conference via web” – I will be one of the presenters. Register here.
  • Spread the word: Connect with other narcolepsy advocates via social media. Like the Facebook Page and follow on Twitter (use #narcolepsy and #patientfocused).
  • Attend the Sept 24, 2013 meeting in person or via webcast: The Sept. 24 meeting is open to the public and free to attend, but space is limited so register today (deadline Sept 13, 2013). Both “live” and webcast participants will be invited to get involved in the discussion. Register here.

**If you can do ONE thing today, please take the survey.**

Everyone’s experience with narcolepsy is unique, so please participate to ensure your voice is represented. Thank you! Check out the wonderful FAQs!

For more about the FDA Initiative, click here.

Posted in Advocacy, Blog, Communicating Narcolepsy, FDA Narcolepsy Patient Meeting, Narcolepsy Awareness, Narcolepsy Blog, Narcolepsy Spokesperson, Narcolepsy Treatment, News/Media

9 Comments

  1. kelly on August 27, 2013 at 3:52 am

    last question..bubble wrap head to toe

    Reply
    • julie on August 27, 2013 at 11:20 pm

      SO true, thank you Kelly! 🙂

      Reply
  2. Carrie-Ann Burns on August 27, 2013 at 3:46 pm

    This is so wonderful Julie, thank you so much i posted this everywhere i can to get as many people involved as possible. Thanks for continuing to be an inspiration to us all!

    Reply
    • Shannon G on August 27, 2013 at 6:29 pm

      Survey done, signed up for both webinars.. Thank you Carrie for spreading the word 🙂

      Reply
      • julie on August 28, 2013 at 1:41 am

        Thank you for taking the survey and signing up for the webinars, Shannon!!

        Reply
    • julie on August 27, 2013 at 11:21 pm

      Thank you so much, Carrie-Ann for your support and help spreading the word. You’re the master of online communications. 🙂

      Reply
  3. Cindy G. on August 29, 2013 at 7:08 pm

    Just finished my survey! I finally got a photo for narcolepsy: not alone. Will get it to ASAP!

    Reply
  4. florence W on September 5, 2013 at 2:58 am

    I did the survey and signed up for the webinar!

    Reply
    • julie on September 9, 2013 at 2:24 pm

      Thank you so much, Florence for raising your voice and supporting the FDA intiaitive.

      Reply

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