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
Kidshealth.org has an article for written for parents about 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 neurofibromatosis.
Orphanet - Neurofibromatosis
Ophranet is online database containing information on various rare disorders. This website contains information on NF as well as links to other articles and organizations.
Type 1 Type 2
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
These resources are available to borrow at the Family & Community Resource Centre. You can also check with your local library or with The Alberta Library for the availability of these resources.
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Neurofibromatosis : A Handbook for Patients, Families and Healthcare Professionals
This book is packed with clear and practical guidance to help those with neurofibromatosis. It includes information about new genetic and diagnostic advance; the psychosocial impact of NF; and cardiovascular and endocrine abnormalities.
Thriving With Neurofibromatosis
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. In her book, Kristi Hopkins focuses less on surviving and more on thriving with NF.
Still Emily : Seeing Rainbows in the Silence
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.
Bumpy Roads have Soft Shoulders : Living With N.F.
Nicole Porlier wrote this book about her experience with neurofibromatosis. 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. Her goal is to give adults and children affected by this disorder the hope that one can live a happy, fulfilling life despite NF.
Thank you to our friends from the Clinical & Metabolic Genetics Program the Alberta Children's Hospital for their contributions.
Current as of: April 22, 2021