Skip to main content

Health concerns of individuals with neurofibromatosis type 1

Help us develop services for people with neurofibromatosis
We would like to invite you, if you are over 18 years and you do NOT have a diagnosis of Neurofibromatosis Type 1 (NF1), to complete a brief, anonymous survey - as part of a control group.

This survey has been designed to help us understand some of the concerns of people with NF1 (e.g. itch and skin concerns), so that we can work towards targeting services. Our aim is to recruit both individuals with and individuals without NF1. 

Only complete the survey once for each person. Thank you for your support.

Ethics approval number: 2019 ETH01229.


You may be eligible to participate in this study if you:

  • Are over the age of 18 years and do not have a clinical or genetic diagnosis of neurofibromatosis type 1.

How to participate

If you are interested in assisting with this important and exciting area of research, please use the following survey link to enter the survey: 

For further information or to request a hard copy survey please contact