Neurofibromatosis (Neuro-fi-bro-ma-to-sis), is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in the body at any time.
Kids Health - Neurofibromatosis
An article for parents on Neurofibromatosis; its symptoms, diagnosis and treatment.
Alberta Tumor Foundation – What is NF?
Created by a local foundation, this article contains information on the difference between type 1 and 2 neurofibromatosis.
NF Society of Ontario - What is NF?
The NF society of Ontario has created a website with information on type 1 and 2 Fibromatosis that also contain imagery to help further clarify the information.
- Orphanet - Neurofibromatosis
NORD - Neurofibromatosis
The National Organization of Rare Diseases (NORD) collects current information on the diagnosis, symptoms and treatment of rare diseases. It also contains an extensive list of organizations that support patients with rare diseases.
Type 1 Type 2
You can download, print, and share this list.
From new genetic and diagnostic advances, to associated cardiovascular and endocrine abnormalities, to the significant psychosocial impact of NF, the book is packed with clear, practical guidance for understanding and living with this disability.
For some, Neurofibromatosis is as clear as the tumors on their face. For others, it hides beneath the surface, creating tumors that destroy hearing, vision, and more. Most people with NF, or any of a thousand other genetic disorders, focus on surviving from day to day. Kristi Hopkins focuses less on surviving and more on Thriving with NF.
At the age of 16, Emily was diagnosed with Neurofibromatosis Type 2 (NF2). With gentle humour and heart-breaking honesty, Emily shares her story. Slowly and painfully, she discovers value in new places, seeing the rainbows in the silence.
I wrote this book about my experience with neurofibromatosis, commonly known as NF, because I wanted to give adults and children affected with this disorder the hope that one can live a happy, fulfilling life despite NF. NF can affect so many different organs within the body, causing such severe complications that it can sometimes be difficult to see life in a positive way.
Thank you to our friends from the Alberta Children's Hospital for their contributions.
This material is designed for information purposes only. It should not be used in place of medical advice, instruction and/or treatment. If you have specific questions, please contact your doctor or appropriate health care professional.
For more information contact the Child Health Information Specialist at 403-955-7745 or firstname.lastname@example.org