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.

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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European Reference Networks support Ukraine

All 24 European Reference Networks (ERNs) launched a dedicated website (https://www.rarediseaseshub4ua.org/) 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.











Posted on 3 February 2023

ERN GENTURIS special issue EJMG

With the publication of the Editorial paper “European collaboration on genetic tumour risk syndromes” by Hildegunn H. Vetti, Ignacio Blanco and Fred H. Menko, the ERN GENTURIS special issue of the European Journal of Medical Genetics is now complete, containing 13 publications by ERN GENTURIS members.







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Posted on 25 January 2023

ERN Workshop on comprehensive gene profiling, molecular tumor board (mtb) and artificial intelligence in the diagnosis and treatment of patients with rare adult cancers

Registration for this EJP RD ERN workshop on 29-30 September in Turku, Finland, co-organised by ERN GENTURIS member Maria Haanpää, is now open:


🚨 Registration deadline: 2 June

📆 Date: 29-30 September






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Posted on 17 January 2023

ERN GENTURIS guidelines on Neurofibromatosis 1 published in eClinicalMedicine

The open-access publication on the ERN GENTURIS guidelines on Neurofibromatosis 1 is now online: doi.org/10.1016/j.eclinm.2022.101818.







Upcoming Events and Webinars

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Dr. Chella van der Post
Hereditary gastrointestinal cancer – the pathologist's perspective

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6 February 2023

Dr. Richarda de Voer
Genetics of (new) colorectal cancer & polyposis syndromes

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8 March 2023

Marco Vitellaro, MD
Familial adenomatous polyposis - the surgeon's perspective

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22 March 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