Neurofibromatosis is the most common genetic neurological disorder. Neurofibromatosis (NF) has been classified into two distinct types: NF1 and NF2.
Neurofibromatosis 1 (NF1), also known as von Recklinghausen NF or Peripheral NF, occurring in 1:3,500 births, is characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumours may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.
Neurofibromatosis 2 (NF2), also known as Bilateral Acoustic NF (BAN), is much rarer occurring in 1:40,000 births. NF2 is characterized by multiple tumours on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumours affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom.
In most of the ‘old’ European countries, self-help groups on neurofibromatosis are active. Some already exist for quite a while others are relatively young or just being initiated. In the ‘new’ European countries, interest in bringing NF-patients and families together and setting up organisations is emerging.
Self-help groups on NF consisting of patients, parents or families of individuals affected often have the responsibility of both care giving and running an organisation. The demands of giving help when you need it yourself can be overwhelming. Every success means broader visibility and increased demands for resources and expertise. In areas such as providing information, developing activities to increase the quality of life of the families affected or organising activities for fund raising or membership recruitment, national groups have joined together in NF-Europe to strengthen their impact and increasing effectiveness. They have joined also to learn form each other, to exchange knowledge and experiences on running and maintaining a self-help group on neurofibromatosis.