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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 15 May 2024

ERN EURACAN and ERN GENTURIS present: Rare cancers and cancer susceptibility syndromes training session, 24 May 2024, Helsinki, Finland

The training is free of charge and organized by the Southern Cancer Center and the Sisä-Suomen Syöpäkeskus.

 

Location:  Hilton Helsinki Kalastajatorppa, Kalastajatorpantie 1, Helsinki

 

Time:  24 May 2024 from 8:30 a.m. to 3:05 p.m

 

Registration:  anne.kairenius@hus.fi 

 

 

DETAILS

 

 

 

Posted on 28 February 2024

Rare Disease Day on 29 February 2024

Date: 29 February 2024

 

On Rare Disease Day, 29 February 2024, we come together to raise awareness and celebrate the strength and resilience of those affected by rare diseases. At the heart of our efforts lies a commitment to drive positive change, empower patients, and advance the quality of care for rare disease patients.

 

 

DETAILS

 

 

 

 

 

Posted on 15 February 2024

5th course in Hereditary Cancer Genetics, Bertinoro, Italy

Date: 17-20 September 2024

 

This course, organised by members of the ERN GENTURIS, aims to deliver up-to-date knowledge on hereditary cancers to clinical and molecular geneticists in training or certified. The programme is available here and the registration will open soon. More information will follow.

 

 

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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Barbara Perić
Familal malignant melanoma - the surgeon’s perspective

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24 June 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