Info
RxNeurofibromatosis

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.

Web Content

• Kids Health - Neurofibromatosis

  Kidshealth.org has an article for written for parents about neurofibromatosis; its symptoms, diagnosis and treatment.

  kidshealth.org/en/parents/nf.html

• NF Society of Ontario - What is NF?

  The NF society of Ontario has created a website with information on type 1 and 2 neurofibromatosis.

  nfon.ca/what-is-nf.html

• 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

  orpha.net

• 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

  rarediseases.org

• Tumour Foundation of BC

  The Tumour Foundation of BC is a charitable organization that has been supporting individuals affected with NF and their families. Their resources include a parent guide, information on NF, and an NF Support Line.

  tumourfoundation.ca/

• Children’s Tumor Foundation

  The Children’s Tumor Foundation has a great resource centre with information about NF in multiple languages, a parent guide book, and resources for kids.

  ctf.org/

Book List

These resources are available to borrow in the Family Library. You can also check with your local library to see if they are available.

You can download, print, and share this PDF or our Destiny Collection list.

• 

  Neurofibromatosis : A Handbook for Patients, Families and Healthcare Professionals

  Bruce Krof (2005)

  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

  Kristi Hopkins (2010)

  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

  Emily Owens (2016)

  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 (2013)

  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.

Contributors

Thank you to our friends from the Clinical & Metabolic Genetics Program the Alberta Children's Hospital for their contributions.

Current as of: January 26, 2024