Global Network of Neurofibromatosis Patient Organisations

Organisation of Care

Tumour surveillance guidelines for NF1

NF Patients United announces that our members have been participating in the process of creating the “Tumour surveillance guideline for NF1”. This process was initiated by ERN GENTURIS and was coordinated by NF Patients United. The creation of this guideline was a collective effort of NF1 specialists and clinicians and provides the most current information about NF1. It is important for your doctors to be aware of this guideline and as such, NF1 patients should present them to their physicians.

What is the benefit of this guideline?
• It takes into consideration your unique needs.
• Balances necessary care and reduces unnecessary treatment.
• Incorporates psychosocial aspect.
• Improves quality of your life.
The surveillance process includes examination, diagnosis, follow-up, treatment and improvement of life.

“It is important for your doctors to be aware of this guideline and as such, as NF1 patient you should inform your doctors!”

The “Tumour surveillance guideline for NF1” is a comprehensive approach to tumour management and it takes into account the latest information about NF1. The work of NF Patients United and its members has made this guideline possible. By following it, we can ensure the best possible treatment for NF1 patients.

We recommend to share this guideline with your doctors!

Find the link to the study here