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OUR EXPERTS

 

PATIENTS AREA

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: General information on European Reference Networks / 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 25 September 2024

5th Course in Hereditary Cancer Genetics in Bertinoro, Italy.

77 students from 23 EU member states, Norway, the UK and 4 other non-EU countries participated in the 5th Course in Hereditary Cancer Genetics in Bertinoro, Italy on 17-20 September 2024.

 

 

DETAILS

 

 

 

Posted on 18 September 2024

ERN GENTURIS 'In the Spotlights'

In the latest ERN GENTURIS 'In the Spotlights' we present dr. Kleoniki Roka, a senior attending physician at Aghia Sophia Children’s Hospital, Athens, Greece

 

 

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Posted on 13 September 2024

Isabel Claro. Gastroenterologist leaves her mark at IPO Lisboa.

IPO Lisboa is in mourning. Isabel Claro has passed away at the age of 57. Too soon. The gastroenterologist began her career at IPO Lisboa, where she completed her specialty internship after graduating (1994) from the Faculty of Medicine of the University of Lisbon.

 

 

DETAILS

 

 

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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.

 

WE ARE HERE TO HELP!

 

 

DETAILS

 

 

Upcoming Events and Webinars

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Tjoung-Won Simon-Park
Adjuvant therapy options for hereditary breast cancer

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23 October 2024

 

Marjolijn Ligtenberg
Molecular profiles of noncanonical malignancies from patients with Lynch syndrome or a BRCA1/2 pathogenic variant may generate putative options for personalized treatment.

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20 November 2024

 

Kenny Rodriguez-Wallberg
Fertility preserving measures in hereditary cancer syndromes – the oncofertility perspective

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11 December 2024

 

 

 

 

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OUR MISSION

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.

 

 

 

OUR VISION

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