Global Network of Neurofibromatosis Patient Organisations


Join this study for NF1 Care!

body with neurofibromas

(Image source:
Body with cutaneous neurofibromas

Stanford University, in collaboration with Johns Hopkins University and The University of California San Francisco (UCSF) is conducting a large study to understand how an individual’s genes affect their development of cutaneous neurofibromas and other features of NF1. The goal of this study is to identify genetic mutations that affect the clinical development of NF1 traits by studying the genome of 1000 people with NF1.

By participating in the study, you can help predict NF1 and contribute to improving NF1 care!!

How does the study work?

>> Step 1: Complete an online survey
>> Step 2: Submit photos of your skin
>> Step 3: Provide a saliva sample

You receive a $25 Amazon gift card for participation in the study and more benefits! Take a look at the Registration page:

Requirements for your participation:

Adults, 40 years or older with an NF1 diagnosis and the presence of at least one cutaneous neurofibroma are invited to participate.

More info…

This study can be done in the following languages: Spanish, English or German.
All info and registration for the study:

Study ends on December 17th! Click here to get started!

You find an explanation for this study in German language here: