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About NFON
About Neurofibromatosis Ontario
Neurofibromatosis encompasses a set of distinct genetic disorders (Neurofibromatosis Type 1, Neurofibromatosis Type 2, Schwannomatosis) which cause tumours to grow along nerves and can affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumours to grow anywhere on or in the body and can cause additional complications such as disfigurments, bone deformities and learning disabilities.
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The Neurofibromatosis Society of Ontario (Neurofibromatosis Ontario) was founded in 1985. The very first meeting included members that are still very active today.
Neurofibromatosis Ontario’s mission is to support individuals and families affected by Neurofibromatosis, to educate its members, health professionals, and the general public about Neurofibromatosis for earliest recognition, identification, diagnoses, monitoring and treatment of Neurofibromatosis and related complications. We also help fund research into the cause, treatment and prevention of Neurofibromatosis and its Complications.
Our vision is a world without Neurofibromatosis.
We hold an annual general meeting in the Spring. Members and the general public come from across the province to hear our guest speakers. This is an opportunity to meet and share concerns, feelings and support each other. We also provide several social opportunities such as a picnic and Neurofibromatosis camp where people can network in a friendly, casual, accepting atmosphere. Our plan is to add government lobbying on behalf of the Neurofibromatosis community to our mission.
Through dedication and ambition we have established a working relationship with physicians, clinics and professionals in their field. We have contact with other Neurofibromatosis organizations worldwide.
Our Directors are always available to help direct you and answer any questions you may have.
