Global Network of Neurofibromatosis Patient Organisations


First Guidelines for Schwannomatosis out now

We would like to share some good news with you:
The ERN GENTURIS clinical practice guidelines for the diagnosis, treatment, management and surveillance of people with schwannomatosis is now published in the European Journal of Human Genetics.

It is the *first* stand-alone guideline on schwannomatosis!

We are very grateful to the ERN GENTURIS guideline group who put a lot of time and effort in developing this guideline. NF Patients United has been actively involved in the development of these guidelines as part of this group with our member Melpo Pittara.

The new Schwannomatosis Guideline:

The complete guideline and pocket guide can be found here: