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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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.








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Posted on 5 June 2023

EJP RD ERN GENTURIS workshop on CDH1 Related Hereditary Diffuse Type Gastric Cancer

12-13 Oct 2023, Radboudumc, Nijmegen, The Netherlands


The registration for the upcoming ERN workshop, organized by ERN GENTURIS member Tanya Bisseling (Radboudumc) is now open:


"CDH1 Related Hereditary Diffuse Type Gastric Cancer: the shift from prophylactic total gastrectomy to optimal endoscopic surveillance". Calling all experts interested in exploring the psychological, molecular, and administrative aspects of CDH1-related hereditary diffuse type gastric cancer! This workshop will offer invaluable insights into the latest research findings and best practices in patient care.


Learn more and register here: https://www.ejprarediseases.org/event/ejp-rd-ern-workshop-cdh1-related-hereditary-diffuse-type-gastric-cancer/







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Posted on 31 May 2023

Online-Symposium: Liquid Biopsy – ctDNA in colorectal cancer and beyond

On July 15th 2023, a free online symposium entitled "Liquid Biopsy – ctDNA in colorectal cancer and beyond" organised by ERN GENTURIS member MGZ - Medizinisch Genetische Zentrum in München will be held via Zoom.

This course is accredited with 5 CME points.

The programme is available here.

Registration is available here


Date/time: 15 July 2023 9:00 - 14:15 CEST

Cost: Free!

Certification: 5 CME-points








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Posted on 31 May 2023

Successful symposium organized by ERN GENTURIS and ERN EURACAN on "Rare cancers and cancer syndromes"

A successful ERN GENTURIS and EURACAN symposium on Rare cancers and cancer syndromes took place on 26 May 2023 in Helsinki, Finland.


Goals of this training: strengthening the cooperation of professionals from Euracan and ERN GENTURIS networks and a joint discussion between patients and professionals.


The following professionals were among the speakers: Prof. Elke Holinski-Feder, Germany (ERN GENTURIS), Prof. Wouter de Herder, Netherlands (Euracan) and Dr. Maria Haanpää, Finland (ERN GENTURIS).


On the picture as well: Prof. Minna Pöyhönen and Dr. Outi Kuismin






Upcoming Events and Webinars

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D. Gareth Evans
New ERN GENTURIS NF1 guidelines and update on NF2 and SCHWN nomenclature

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7 June 2023

Marieke de Laat
Von Hippel-Lindau disease - the endocrinologist’s perspective

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22 June 2023

Elke Holinski-Feder
Lynch syndrome update

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6 September 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