I left home for Oslo yesterday morning, having had an invite to attend and speak at Frambu (www.frambu.no), from old friends at NevSom - Norwegian Centre for Expertise for Neurodevelopment Disorders and Hypersomnias, Oslo University Hospital, a part of the Norwegian Advisory Unit on Rare Disorders.
I’m really looking forward to the opportunity of spending time with the NevSom team and their group of young adults who have a range of disorders, including narcolepsy. It’s a fantastic opportunity to share information and also learn how other countries tackle our disorder.
Frambu is one of nine centres of excellence in the national skills service for Rare Disorders and the only centre with premises to host larger events and gatherings.
I enjoyed presenting this morning ahead of lunch, followed by information about the weeks activities and formal introductions plus sharing experiences and saying what they want to say about their diagnoses. Following this, they were put into 4 groups to plan for 2 dinners that are healthy and easy to make. On Wednesday afternoon we will then have a competition where they will make the dishes, and a chef (from a Norwegian famous restaurant) will choose a winner.
On Tuesday a nutritionist will speak for 2 hours, and then a child and adolescent psychiatrist after that.
On Wednesday school, concentration and education is on the program, before the cooking competition.