NF Patients United

Global Network of Neurofibromatosis Patient Organisations

What is NF?

Neurofibromatosis is a rare genetic disease, that includes three different diseases that affect over 200,000 people in Europe. All are genetic diseases that can cause the growth of tumors on the nerves anywhere in the body, with severe consequences. Patients can go blind, deaf, develope chronic pain or life threatening tumors, amongst a large variety of other potential symptoms. Until now there is no cure for any of the three diseases. Of course the diagnosis is a shock for the patients and their families. They live constantly worrying about their health, trying to cope with a disease that is highly unpredictable.