INFO SHEETS

Patient Checklist for Managing NF1

A graphic informational pamphlet to help you take charge of your symptoms.

Physician’s Guide to the Management of NF1

A research-based resource for healthcare providers treating patients with NF1.

Management Guidelines for Adults with Neurofibromatosis Type 2 (NF2-SWN)

These guidelines provide comprehensive recommendations for healthcare professionals managing patients with NF2-related schwannomatosis (formerly known as NF2).

Cutaneous Neurofibromas in NF1

Cutaneous and subcutaneous neurofibromas, also called dermal neurofibromas, are the most common types of neurofibromas in NF1.

Self-Monitoring Malignancies in NF

Malignant peripheral nerve sheath tumours are rare but early detection is vital.

Questions to Ask Before Surgery

Surgery doesn’t have to be scary. One of the best ways to reduce your fear is to empower yourself with information.

Discussing NF With Your Child

Initiating a conversation with your child about neurofibromatosis (NF) can be a daunting task for many parents. Most feel unprepared to navigate this discussion successfully. There isn’t a one-size fits- all approach and there is no singular ‘right’ or wrong’ way to have this conversation. This resource provides helpful tips and suggestions for exploring this discussion with your child.

Understanding the Risk of Breast Cancer in NF1

Women with Neurofibromatosis Type 1 (NF1) face a significantly higher risk of developing breast cancer—up to five times greater before age 50. This downloadable resource outlines the unique risks, the importance of early and regular screening, and how to advocate for proper care. It also includes a recommended screening timeline, signs to watch for, and information on high-risk clinics in British Columbia. Empower yourself with knowledge and take proactive steps toward early detection and care.