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  • Home
  • About EU-NN
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  • Narcolepsy and CDH
    • What is Narcolepsy?
    • What are the symptoms of narcolepsy?
    • Who develops narcolepsy?
    • How is narcolepsy diagnosed?
    • How is narcolepsy treated?
    • What causes narcolepsy?
    • Narcolepsy in Children
    • Narcolepsy and Pregnancy
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    • European sleep disorder centers
    • Patient Societies
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  • Report from Patient Session during EUNN Narcolepsy Day 2019 in Bern

Report from Patient Session during EUNN Narcolepsy Day 2019 in Bern

EU-NN Patient Session

In a break from tradition, the Patient Session was moved from Sunday to Saturday am and all delegates and speakers were provided with a task set by patient representatives from various country associations. 12 workgroups were formed across 4 rooms with mixed teams of patients and clinicians. Each group was tasked with discussing issues surrounding the “Quality of Life” for patients and how this could be improved. There was a fantastic atmosphere across each room as ideas were debated and eventually transferred onto a poster sized SMART Objective sheet for display in the conference lobby.

 

Worksheet Display & Voting

All 12 of the completed SMART Objective worksheets were displayed from Saturday afternoon until Sunday morning and all attendees were allowed 3 votes for any of their preferred choices. Multiple votes for one idea were allowed.

 

 

Peer Review and Voting

On Sunday morning, one hour was devoted to reviewing the three worksheets with the most votes. The detail of these sheets is currently being reformatted for circulation with the intent that these ideas are progressed as projects by interested volunteers from across the EU-NN. Worksheets in MS Word format will be circulated to all attendees shortly.

 

 

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