NF1 Cutaneous Neurofibroma Consortium Project

Author: PolyGenRX
Published On: 11/24/2022

PolyGenRX, in partnership with The University of Newcastle and several NF1 researchers, is conducting a new NF1 project. Adults with NF1 are invited to participate in the NF1 cutaneous neurofibroma (cNF) consortium project.

Why do we need your help with this research?

Neurofibromatosis type 1 (NF1) is the most common neurogenetic condition, affecting 1 in 2,500 people. NF1 causes brown skin marks (cafĂ© au lait spots) and benign (non-cancer) growths around the nerves called neurofibromas. Skin (cutaneous) neurofibromas are small tumors in or under the skin. These are usually small in size but may increase in number throughout adulthood. People with NF1 can have different numbers of skin neurofibromas.

It is difficult to know how many skin neurofibromas someone will develop. These can cause distress for those affected, particularly if they appear in large numbers. We are attempting to understand why some people are mildly affected whereas other people have many neurofibromas.

There is currently no drug treatment for these skin neurofibromas.

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

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

Learn more about the study, if you quality, and how to get involved on the NF1 Cutaneous Neurofibroma Consortium Project site.

Want to view archived newsletters? Click Here!


Sign up to receive the latest neurofibromatosis news and information in your inbox!



Have a story you'd like to share with the NF community? Click Here!