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Welcome to the ERN GENTURIS website

ERN GENTURIS is a European Reference Network (ERN) for all patients with one of the rare genetic tumour risk syndromes (genturis).

***Emergency information for refugees coming from Ukraine and doctors***

If you are a patient coming from Ukraine with neurofibromatosis 1, neurofibromatosis 2 or schwannomatosis (thematic group 1) or a treating physician:

The information above is currently focused on patients with neurofibromatosis 1, neurofibromatosis 2 or schwannomatosis (thematic group 1). Information on other rare diseases that are covered by ERN GENTURIS will be made available as soon as possible.

What is an ERN?

A European Reference Network (ERN) is a network connecting health care providers and centres of expertise of highly specialised healthcare, for the purpose of improving access to diagnosis, treatment and the provision of high-quality healthcare for patients with Rare Diseases no matter where they are in Europe. Patient representatives are involved in the governance of ERNs.

Check out more information about ERNs: videos / flyer / FAQs.

Genturis patients

Genturis patients are at very high hereditary risk of developing common cancers, which are often located in multiple organ systems. In case they are diagnosed with cancer they need different treatment and follow-up as compared to non-hereditary cancers.

The aims of ERN GENTURIS are:
  • Improved identification of people living with a genetic tumour risk syndrome
  • Reduced variation in clinical practice and outcomes
  • Development of evidence based clinical guidelines
  • Development and use of patient registries, biobanks and research studies
  • Defined health care pathways to facilitate improved access to international specialist clinical knowledge for patients and their families living throughout the EU
  • Pan-European Development and use of patient registries, biobanks and research studies

ERN GENTURIS takes a family-based approach, focussing not just on the individual but also their relatives who may also be at risk given the hereditary nature of the conditions.

ERN GENTURIS is coordinated by Radboud university medical center in Nijmegen, The Netherlands.

Download the factsheet about ERN GENTURIS

ERN GENTURIS is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Commission. For more information about the ERNs and the EU health strategy, please visit http://ec.europa.eu/health/ern