Schwannomatosis and neurofibromatosis

Schwannomatosis and neurofibromatosis

Thematic group 1

Schwannomatosis and neurofibromatosis is a group of three conditions in which tumours grow in the nervous system. The tumours are generally non cancerous.

The three types are:

The cause is a genetic mutation in certain genes. In half of cases these are inherited from a person's parents while in the rest they occur due to spontaneous mutations. The tumours involve supporting cells in the nervous system rather than the neurons.


Thematic leads

The thematic leads for schwannomatosis and neurofibromatosis are:

Rianne Oostenbrink, assistant professor paediatrics, department general paediatrics, ErasmusMC, Rotterdam, the Netherlands


Said C. Farschtschi, M.D., NF-specific genetic diagnostics and genetic counselling, Consultant neurologist, Head of phacomatoses section, Neurofibromatosis outpatient department and day clinic, Department Of Neurology, University Medical Center Hamburg-Eppendorf in Hamburg, Germany



Patient representatives

Claas Röhl, chairman of the Austrian patient organisation for NF patients "NF Kinder", ERN GENTURIS Board member.

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João de Sousa e Silva, patient representative for NF2, NF Patients United

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