Sessions for children with Noonan syndrome and other RASopathies

Interdisciplinary sessions at the kbo-Kinderzentrum München

In the interdisciplinary sessions at the kbo-Kinderzentrum München for children with Noonan syndrome and other RASopathies, the focus is on the quality of life of the entire family in addition to the development and non-cardiological medical aspects. Paediatric and psychological appointments are arranged in order to discuss and treat the common symptoms and problems associated with RASopathies, such as eating and feeding disorders in early childhood, microsomia, orthopaedic anomalies and developmental delays. Alongside this, there are also regular appointments for occupational therapy diagnoses, since sensory hypersensitivity is also often found among our patients. Given the enormous progress that has been made in medical research, it is now increasingly possible to offer patients a mutation-specific treatment that reduces symptoms. It is therefore also very important to us that we advise you with your child about the latest state of research. In addition, our full range of diagnostic and treatment services at the kbo-Kinderzentrum München is available to our patients if necessary.

Interdisciplinary sessions at the Deutsches Herzzentrum München
The detailed paediatric cardiological examination is carried out in the Deutsches Herzzentrum München (DHM) in the special treatment sessions for children with Noonan syndrome and other RASopathies under the guidance of PD Dr. med. Cordula Wolf. This should be done for all children with RASopathies, as genetic heart diseases can occur within this syndrome. The integrated cardiological investigation in the DHM includes an in-depth discussion with experts in the field of genetic heart defects, especially in connection with RASopathies. In addition, alongside the vital parameters, a cardiological physical examination, electrocardiography and echocardiography are carried out. Subsequent diagnostic measures, such as a 24-hour long-term ECG or cardiovascular magnetic resonance tomography, are then initiated if necessary. Together, the experts at kbo and DHM are in scientific discussions with various research groups so that our patients can be offered appropriate new treatments.