Global Network of Neurofibromatosis Patient Organisations


About 30.000 people in Europe are affected by Neurofibromatosis Type 2 (NF2). The affected people are born with a genetic mutation in the NF2 gene. This affects the production of a protein called „Merlin“.  There is no cure or special treatment available today. Affected people have a 50% risk of passing on the disease to their children.

NF2 can cause tumours on the nerves, emerging from the Schwan-cells. These tumours often occur in the brain and the spine. Leading to 50%  of adult patients losing their hearing. Also facial paralysis, impairment of balance, headaches, chronic pain and also cosmetic issues can trouble the lives of NF2 patients.

Unlike NF1, NF2 can be hard to diagnose at a young age. The progression of the disease and the related tumours can lead to a quickly deteriorating health. Surgery options and off label treatments have clear limitations. The development of new treatments is urgently needed.

50% of the patients have healthy parents.
NF2 can happen to anybody.
That’s why we all should care.