Global Network of Neurofibromatosis Patient Organisations


About 200.000 people in Europe are affected by Neurofibromatosis Type 1 (NF1). The people affected are born with a genetic mutation in the NF1 gene. This affects the production of a protein called „Neurofibromin“. There is no cure or special treatment available today. Affected people have a 50% risk of passing on the disease to their children.

For children with NF1 hospital visits are part of their childhood. Over 100 different symptoms can manifest. The main issue of NF1 are tumours that can grow on the nerves anywhere in the body, including the brain, the spine, life important organs or the skin. Those mostly beneign tumours can be severly disfiguring and therefore can have a huge impact of the quality of life of the patients.

The course of the disease can be very different in each individual. You never know when and what will happen next in NF1. While children often have only mild symptoms, the diseases progresses with age and 99% of adult patients have benign tumours on the skin, so called cutaneous neurofibromas, which often cause cosmetic issues, itching and pain. Surgery options and off label treatments have clear limitations. The development of new treatments is urgently needed.

50% of the patients have healthy parents.
NF1 can happen to anybody.
That’s why we all should care.