Our first project has been designing and manufacture the Narcolepsy Medical Information Card.
First handed out (for free) at the NN Conference 2015 in Minneapolis.
We started a narcolepsy registry with Sanford Research in their program called CoRDS. With more than just medical questions.
We still need to collect data on pregnancy, transport, work and social consequences.
And for example record how patients use baclofen for narcolepsy. Please enroll!
We have a project video conference with Skype.
For people with narcolepsy who have never met another PWN we started Skype meetings.
We are also testing a new software package for meetings and presentations.
Where many can join in and watch and listen.
This can only be used by a PC, laptop or Mac. You can’t join by cellphone yet.