Many factors have ameliorated prognosis for individual with NF1: higher knowledges and awareness on the disease, early diagnosis, better clinical counseling in reference centers, appropriate surveillance of symptoms, early surgical therapy in growing neurofibromas and better cosmetic treatment [3].There is an 8-15 years reduction in average life expectancy and malignancies and cardiovascular disease are the most frequent causes of death [8,9]. On 2,467 Danish patients with NF1 diagnosis, nerve and peripheral ganglia disease, pneumonia, epilepsy, bone and joint disorders, and intestinal infections were major contributors to the excess disease burden due to the disease [10]. Non-tumor symptoms contribute significantly to morbidity especially in relation to size, location of tumor/s and growth velocity