Neurofibromatosis type 1 (NF1): Resources

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A list of websites with in-depth information on neurofibromatosis type 1 (NF1) in children.

Key points

  • A list on online resources about neurofibromatosis type 1 where you can get information, personal stories, and learn about living and coping with the condition.

Here are a few helpful resources on neurofibromatosis type 1 (NF1).

Neurofibromatosis Society of Ontario

www.nfon.ca

The NFSO provides services and support to families affected by NF1. The web site contains information about NF1, personal stories and information about news and events.

British Columbia Neurofibromatosis Foundation

www.bcnf.bc.ca

This web site offers useful pamphlets, videos and patient stories for families. The pamphlets can be ordered online. Links to other NF1 web sites are also found on this site.

Children’s Tumour Foundation

www.ctf.org

This web site contains pamphlets and newsletters on NF1. Topics include:

  • Questions and answers: Answers to the most commonly asked questions about NF
  • The Child with neurofibromatosis type 1
  • Facing neurofibromatosis: A guide for teens
  • About neurofibromatosis type 1: A guide for adults
  • Neurofibromatosis: Information for patients and families
  • Achieving in spite of... A booklet on learning disabilities

The Hospital for Sick Children (SickKids): AboutKidsHealth

How the Body Works: Genetics

Learn how the body works by watching animations and drawings. In the Genetics section, you can learn about:

  • genes and chromosomes
  • inheritance
  • genetics and health

Understanding NF1

www.understandingnf1.org

This web site has videos of NF1 expert Dr. Bruce Korf speaking with parents. Patients discuss how they live and cope with NF1. The site offers a glossary to help you understand what NF1 terms mean.

Last updated: March 10th 2010