A Fun First Nordics STXBP1 Family Meeting

Nordic family meeting August 6th 2022.

6 families made it together in Asker Norway. We had a day with lots of fun activities and getting to know each other. It is the first Nordic family meeting but we all agreed it will not be the last!

Bouncing castle and dog sleeding, on wheels since it is summer was organised for our Stx’er and their siblings. It seemed most of the kids loved it the faster the better 😁

A short presentation from The National Competence center for rare epilepsy-related diagnoses on databases and Orpha registry was the professional input for the day.

Thank you to all the families who made the trip to Asker, Norway! We look forward to our next family meeting.

Lone Jelva Hansen