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


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: promotional material / flyer


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.

For information on how to participate in genturis research, see: https://genturis-registry.eu/.

Information for health professionals and patients considering a genetic test to look for an inherited cause of cancer is available at https://www.cancergenetics.eu.



What can ERN GENTURIS do for patients?

ERNs are not directly accessible to individual patients but if you are a patient or family member struggling with a rare genturis syndrome, we encourage you to speak to your local healthcare provider about us. Your doctor remains your single point of contact if you are referred to an ERN centre.

Each country has specific rules and arrangements for the referral of patient cases to other specialists.

Below you will find some useful information:




How to refer a patient to ERN GENTURIS?

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Further information is available here.



Latest news

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Posted on 17 October 2023

2024 InSiGHT Biennial Meeting

Abstract submission is now open for the 2024 Insight Biennial Conference to be held in Barcelona at 19th-22nd June 2024.


This conference focusses on the worldwide improvement of care of patients and families with any hereditary condition resulting in gastrointestinal tumours.









Posted on 6 October 2023

The rare disease community comes together in calling on the EU institutions and our national governments to stand by the European Reference Networks

An open letter signed by all ERNs calling for a renewed and continuous support to the ERNs was published.


"We, the undersigned, representing the European Reference Networks (ERNs) and people living with a rare disease across Europe, call on the EU institutions and EU Member States’ governments to stand by the European Reference Networks and to uphold their commitment to enable long-lasting impact in people’s lives and, fundamentally, give all people living with a rare or complex condition in Europe the same opportunities to access timely and adequate specialised healthcare."









Posted on 28 September 2023

Just published: Thematic Group 1 team statement outlining the implementation of the new nomenclature within ERN GENTURIS!

“Now it is the time to embrace the new nomenclature (Neurofibromatosis type 2 will become NF2-related schwannomatosis, and schwannomatosis will be categorised as SMARCB1-related schwannomatosis, LZTR1-related schwannomatosis, 22q-related schwannomatosis, or schwannomatosis not otherwise specified (NOS)) within ERN GENTURIS. We encourage all GENTURIS members to advocate for the adoption of this nomenclature in their respective countries.“


TG1 Leader Ignacio Blanco






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European Reference Networks support Ukraine

All 24 European Reference Networks (ERNs) launched a dedicated website (https://www.erncare4ua.com/) and social media campaign (#ERNcare4Ua) to collect information to help health professionals find support for Ukrainian patients with rare diseases: diagnosis, treatment, advice.


In addition, the Coordinators of the 24 European Reference Networks (ERNs) have issued a statement to support people with Rare Diseases and Complex Conditions affected by the war in Ukraine.


If you are a patient with a genetic tumour risk syndrome coming from Ukraine or a treating physician and you require medical assistance, please contact us at: genturis@radboudumc.nl.








Upcoming Events and Webinars

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Eamonn Maher
Hereditary Leiomyomatosis and Renal Cell Cancer, the clinical geneticist’s perspective

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6 December 2023





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The main aim of ERN GENTURIS is to improve access to diagnosis, treatment and the provision of high-quality healthcare for patients with rare genetic tumour risk syndromes no matter where they are in Europe.





To enable patients with genturis syndromes to receive appropriate diagnosis and treatment and for the healthcare professionals to enhance knowledge generation, get appropriate training and contribute in the research activities that are currently ongoing or will be available in the future.


ERN GENTURIS is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are funded by the European Commission.

For more information about the ERNs and the EU health strategy, please visit https://health.ec.europa.eu/european-reference-networks/overview_en