Patient-based Registry

Noonan-Kinder e. V. Deutschland

We are a support group for families affected by Noonan syndrome. In 1998 the Noonan-Kinder e.V. Germany was founded. Our board consists of 2 chairmen, management and assessors. Our association organizes annual family reunions, time-out weekends for mothers/fathers, as well as youth and teen meetings. This is where everyone recharges their batteries, makes friends and has lots of fun and time for each other. Noonan syndrome changes the family situation, sometimes more, sometimes less. We advise and inform those affected and their relatives. We form networks and offer the opportunity to exchange experiences. We do public relations work and support research on Noonan syndrome.

We provide information on how to deal with health problems of those affected. We provide information about support measures and use the knowledge and experience in our association for our children. Affected families find a place to exchange ideas about the emotional and psychological burdens of the disease. Our motto is: Together we are strong.

Main contacts

Photo of Angelika Dittmann
Angelika Dittmann