Introduction and Terms & Conditions

Welcome to the National Neurofibromatosis (NF) Skin And Mental Health Survey!

We appreciate you taking the time and participating in this survey! The National Neurofibromatosis (NF) Skin And Mental Health Survey aims to better understand the effects of Neurofibromatosis Type 1 (NF1) and the experiences of Canadians living with the disease. This survey is particularly interested in evaluating cutaneous (skin-related) symptoms and their impact on mental health. The survey will include questions about your demographics, diagnosis, effects of neurofibromatosis on your mental health and day-to-day life, as well as your experience with previous treatments. The duration of this survey is estimated to be approximately 20 minutes.  

It is important to understand that the information you provide will be kept strictly confidential and will only be seen by the creators of this survey. The data collected from the survey will be analyzed and used to draw conclusions. These conclusions will then be published in a magazine and / or scientific journal. Your name and other personal identifiers will not be included in these publishments. Your participation in this survey will help provide greater awareness to the general public and scientific community about the mental health effects of NF. Our goal is to ultimately improve the physical and mental wellbeing of those affected by the skin-related symptoms of NF1.

If you have any questions or concerns, please feel free to contact the team leader, Muskaan Sachdeva, at