Patient-based Registry

Svenska Noonanföreningen

The Swedish Noonan Association is a non-profit organisation for people with Noonan syndrome and their families. We are inclusive and also welcome individuals and families with related RASopathies.

Our main purpose is to support our members and provide spaces for them to meet. Every year since 1997, we arrange a four-day conference for 80 - 110 members somewhere in Sweden with lectures and lots of activities. The “family camp” is our main activity, but we also arrange meetings for our teenagers and their siblings and for adults with Noonan syndrome.

Main contacts

Photo of Pi Tufvesson Cohen
Pi Tufvesson Cohen