For the attention of all PWN worldwide

It's an exciting time for the worldwide narcolepsy community. As many of you will know, narcolepsy was selected as one of the 12 initial diseases of interest by the US FDA (as part of the Patient-Focused Drug Development Initiative) earlier this year. The PFDDI maybe an American based initiative, however I'm sure most would agree that the research opportunities that can potentially arise from it, will benefit all PWN worldwide.


An organisation named Unite Narcolepsy has been set up to bring PWN together and established a number of ways PWN can become involved and have their voices heard. Firstly there's a survey for PWN to complete, aimed at collecting data relating to personal experiences of living with the condition. Data collected will be fed back to the US FDA to enable them to gain a greater understanding of how the condition affects our lives and the lives of those close to us. The survey is anonymous and therefore I urge you to honestly share all the elements that affect you, no matter how embarrassing. Unite Narcolepsy are also running a number of interactive webinar (virtual chats) for PWN (details provided in the link) to discuss elements of the initiative and how it could benefit us all.

The above is in preparation for the first FDA public meeting to discuss the condition from a patients perspective, which is to be held in Washington on 24th September. The meeting can be attended in person or virtually via an online link and everyone needs to register their attendance for both (which is free) by 13th September. T. Registration for the public meeting can be made here and further information regarding the PFDDI can be be found here.

 Become involved and add your voice.