FOSMN (Facial Onset Sensory and Motor Neuronopathy) is an extremely rare progressive neuron disease. At this time about 30 to 40 patients are described in medical literature worldwide, but it is suspected more suffer from FOSMN.

About this site is dedicated to gathering patients, sharing patients’ experiences and information, and supporting initial research into FOSMN.

This site is created by a small number of FOSMN patients. Currently we are in contact with patients from The Netherlands, Norway, Germany, Spain, Portugal and the US. We greatly welcome anyone else suffering from or otherwise taking an interest in FOSMN.

Some of us are currently (early 2018) involved in a research project carried out by the University Medical Center Utrecht, The Netherlands, which aims at further understanding the causes and characteristics of this disease.

Please visit and follow our Facebook page for the latest developments.