A group of Australian researchers are doing a study to learn more about cutaneous neurofibromas (benign skin lumps) in adults with NF1. They aim to understand why some people are mildly affected and other people have many neurofibromas, with the hope of finding a treatment.

This research aims to work in partnership with adults living with NF1 to improve our understanding of:

  • How genetics affects the number of skin neurofibromas a person with NF1 may develop.
  • How to treat skin neurofibromas in the future.

If you are an adult (age 18 or older) with a clinical or genetic diagnosis of NF1 and would like to participate, visit NF1project.com You will be asked to consent online, complete a questionnaire and provide a photograph. A saliva kit for genetic testing will be sent in the post.

Contact info@NF1project.com if you would prefer not to provide a photo.