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.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.











Posted on 21 September 2023

Letter in the Guardian by ERN GENTURIS Supporting Partner Marc Tischkowitz from Cambridge University Hospital.

A letter from ERN GENTURIS Supporting Partner Marc Tischkowitz from Cambridge University Hospital on the importance of UK re-joining the ERNs was published in the Guardian on 21 September 2023:


The UK is missing out on EU collaboration to improve treatment for rare diseases | Brexit | The Guardian


The ERN GENTURIS team wholeheartedly supports this letter and would be very pleased to see our UK Partners rejoining ERN GENTURIS as Full Members!









Posted on 21 June 2023

Special edition ERN GENTURIS newsletter to celebrate the establishment of the GENTURIS registry.

This special edition newsletter is in celebration of the establishment of the GENTURIS registry. Over the last years the GENTURIS registry has been established and the implementation of the registry is now up and running. This newsletter shows an impression of the GENTURIS registry and gives a tour along all developments.


ERN GENTURIS newsletter June 2023 - GENTURIS registry






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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/








Upcoming Events and Webinars

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Bev Speight
Haematological malignancies – a genetic counselling perspective

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11 October 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