We have several new projects in mind and will start them where our financial space allows us to.
Therefor we will start our list as follows;
- Fundraising. We will need donations to continue this work and provide these services for free, to a community that already struggles with money issues. Part of this will be seeking for sponsors outside the N community.
- Development of an PWN4PWN app for Android and I-phone to reach out to those that are not on Facebook or internet.
- Designing flyers and posters for adding to information corners at hospital and other medical buildings. This might be of great help, searching for other PWN in your own area. PWN4PWNFlyerUK is already available on our Facebook Group and here at “Resources”.
- We started a narcolepsy registry with Sanford Research in their program called CoRDS. With more than just medical questions.
We still need to collect more data on pregnancy, transport, work and social consequences. And for example record how patients use baclofen for narcolepsy. This questionnaire needs to be expanded, preferably by our future medical advisory board.
- Forming a medical advisory board with specialists and scientist to advise us on any medical questions we might have or get. Now and in the future.
- Creating our own annual narcolepsy event. Possibly with a scholarship for travel costs if we can find a sponsor for that specific part.