NEUROFIBROMATOSIS SOCIETY OF ONTARIO
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Mission Statement
The Neurofibromatosis (NF) Society of Ontario (NF Ontario/NFON) is completely driven and organized by volunteers. Our Mission is to provide support, information and assistance to families challenged by NF, work closely with clinical and research professionals who specialize in the treatment of NF, help seed and fund research and provide information about Neurofibromatosis to physicians and the public to familiarize them with the disorder for early recognition and diagnosis. Although not everyone is seriously affected by medical problems associated with NF, monitoring for the known complications which can occur is an important part of routine healthcare for individuals diagnosed with the disorder. Our Vision is universal awareness of the disorder, prevention after discovery of a cause, successful treatment for those affected, cure to end NF
About This Cause
Neurofibromatosis(NF) encompasses a set of distinct genetic disorders (NF1, NF2, Schwannomatosis) which can cause benign and malignant nervous system tumours, however, can also affect multi systems including musculoskeletal, endocrine, skin and organs. Neurofibromatosis may cause complications such as disfigurement, bone deformities, increased risk of cancer, blindness, hearing loss and pain, just to name a few. NF signs and symptoms can be variable, progressive, unpredictable and at times devastating. Symptoms range from very mild with barely any sign of the disorder to more severe with significant complications. Although 50% of children born with Neurofibromatosis have inherited the disorder from a parent, NF can also occur spontaneously with no family history.