Neurofibromatosis is a complex, uncommon, multi-systemic genetic disorder that can prove challenging for a general practitioner who might only have a singular patient with neurofibromatosis in their practice.

With the advancement through clinical research, the management and treatment guidelines for adults with neurofibromatosis type 1 were updated in 2020.

The Tumour Foundation of BC is excited to share these updated guidelines that were developed in partnership with clinicians in both British Columbia and Ontario.

Download the new physician guidelines here.

A self-management version for adults patients is also available to download here.

If you would prefer printed copies mailed to you please complete the form in the dropdown below:

Information for Medical Professionals
Neurofibromatosis type 1 (NF1)

Download it here.

New Guidelines for the Care of Adults with NF Type 1

A new, detailed clinical practice guideline has been made available on the care of adults with neurofibromatosis type 1. This was written to help physicians treat their patients with NF1 and is a great resource to share with your doctor. It’s a wonderful piece published by the The American College of Medical Genetics and Genomics (ACMG) and written collaboratively by several NF experts.

Download it here.

Health Supervision for Children With Neurofibromatosis Type 1

from The American Journal of Pediatrics

Care of Patients with NF Type 2

Consensus Recommendations for Current Treatments and Accelerating Clinical Trials for Patients With Neurofibromatosis Type 2

from The American Journal of Medical Genetics (Sep 2011)