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: 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.



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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26 September 2022

4th Course in Hereditary Cancer Genetics, Bertinoro, Italy

The 4th Course in Hereditary Cancer Genetics, which took place on 20-23 September 2022, in Bertinoro, Italy, was a huge success. Sixty-two students received training from 15 ERN GENTURIS members. Lectures will be available as on-demand webcast from 26 September through the European Society of Human Genetics: https://www.eshg.org/index.php?id=hereditary-cancer






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5 September 2022

ERN Research Training Workshops call

The ERN Research Training Workshops funding opportunity is now open for applications until October 1st. See https://www.ejprarediseases.org/ern-research-training-workshop/







Upcoming Events and Webinars

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Prof. Maurizio Genuardi
The process of variant classification and its implications for clinical management

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5 October 2022

Prof. Janez Žgajnar
Prophylactic mastectomies – the surgeon's perspective

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26 October 2022

Assoc. prof. Angelique Flöter Rådestad
Hereditary breast- and ovarian cancer, aspects on risk reducing measures and hormonal replacement – the gyne-oncologist's perspective

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9 November 2022





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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