Global Network of Neurofibromatosis Patient Organisations


About 19.000 people in Europe are affected by Schwannomatosis. The affected people are born with a genetic mutation in the SMARCB1 or LZTR1 gene.

Affected people have a 50% risk of passing on the disease to their children.

Schwannomatosis is very much alike as NF2. Brain tumours are less common in Schwannomatosis patients than in NF2 patients. It typically causes Schwannomas, benign tumors, that can occur anywhere on the nerves. They can cause severe, chronic pain and even lead to loss of function of a nerve.

85% of Schwannomatosis patients have healthy parents.
Schwannomatosis can happen to anybody.
That’s why we all should care.