Julie Flygare Represents Narcolepsy at FDA

By julie | March 3, 2013 |

On Wednesday, Feb. 27, 2013, I attended an update meeting on FDA’s Patient Focused Drug Development Initiative. Last fall, I led the campaign urging FDA to include narcolepsy in this 20 disease innovative program (read more here). I testified at the FDA hearing and hundreds of narcolepsy advocates sent in comments of support.

FDA received over 4,500 comments from various disease areas. FDA will announce the chosen disease areas by the end of March and publish results in the Federal Registry. 

Wednesday’s meeting explored options for how FDA might engage patient communities in the Patient-Focused Drug Development program. I enjoyed participating and representing narcolepsy in the discussion.  

I truly hope narcolepsy is chosen for the FDA initiative. I will report back as soon as I get word.

For updated posts about the FDA Initiative, click here.

Posted in Advocacy, Blog, FDA Narcolepsy Patient Meeting, Narcolepsy, Narcolepsy Awareness, Narcolepsy Research, Narcolepsy Treatment, News/Media, REM Runner Blog, Washington DC

9 Comments

  1. Angie Meehan on March 4, 2013 at 12:42 am

    Thank you so much Julie for your outreach to help find better management/cures for narcolepsy. You are so invaluable to me and everyone else. God bless you and keep you in his care!
    Peace and Love,
    Angie Meehan

    Reply
    • julie on March 4, 2013 at 12:46 am

      Thank you so much, Angie! It’s my pleasure.

      Reply
  2. Nellie on March 4, 2013 at 4:19 pm

    I can’t wait to hear the results!!

    Reply
    • julie on March 4, 2013 at 10:11 pm

      Thank you, Nellie. Me too. Fingers crossed for narcolepsy!

      Reply
  3. Makky's Mom on March 4, 2013 at 6:27 pm

    Thank you Julie, for representing us and for the update. I’m so happy to see all the attention narcolepsy is receiving these days. Just this past weekend, I attended a Workshop Presentation on Childhood Narcolepsy at Toronto Sick Kids Hospital. It humbles me to see all the doctors and scientists that have chosen to make beating narcolepsy their life passion.

    Reply
    • julie on March 4, 2013 at 10:12 pm

      Thank you, Makky’s Mom! Narcolepsy is all the buzz in the scientific communities these days. I’m glad to help give the community a voice here in Washington too. Big smiles, Julie

      Reply
  4. Chelsea on March 6, 2013 at 12:16 pm

    Julie,

    Thank you Julie!

    Crossing my fingers, arms, legs and toes!

    Reply
    • julie on March 6, 2013 at 4:17 pm

      Thank you, Chelsea! I will let you know as soon as I get word. Big smiles and many thanks, Julie

      Reply
  5. Narcolepsy selected for FDA Patient Focused Drug Development Initiative (PFDDI) on April 12, 2013 at 3:26 pm

    […] 2012)FDA Initiative Materials (October 2012)A Note of Thanks & FDA Update  (November 2012)Julie Flygare Represents Narcolepsy at FDA (March 2013) […]

    Reply

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