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ERN GENTURIS - European Reference Network (ERN) for all patients with one of the rare and/or complex 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 and/or complex 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 may need different treatment and follow-up as compared to patients with 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:
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European Patient Advocacy Group (ePAG)
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How can I find specialist centres?
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Information on genetic testing (www.cancergenetics.eu)
Latest news |
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Posted on 28 February 2026
Special ERN GENTURIS Podcast Episode: “Rare but Not Alone”
In recognition of Rare Disease Day, we dedicate this episode to the millions of individuals and families living with rare diseases across Europe and beyond.
Patient Representative Story
Our ePAG representative, Georgina Hoffmann, whose family was among the first to undergo genetic testing for Lynch syndrome in the late 1990s, confirming a pathogenic MSH2 gene variant, shared her story for Rare Disease Day in the story you can find on the JARDIN website.
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Posted on 14 January 2026
The open-access publication “ERN GENTURIS guideline on counselling on reproductive options for individuals with a cancer predisposition syndrome (including genturis) is now online: https://doi.org/10.1038/s41431-025-02007-4
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Posted on 18 December 2025
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 registration will be opened on April 1st 2026.
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Posted on 17 December 2025
Registration fo the ESMO Preceptorship on Hereditary Cancer Genetics that will take place on 11-12 May 2026 in Lugano, Switzerland, is now open!
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Pinned
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Upcoming Events and Webinars |
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Marc Tischkowitz |
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PALB2 at 20 – should we now call it “BRCA3”? |
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11 March 2026 |
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Richarda de Voer and Marleen Kets |
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CHEK2 germline pathogenic variants |
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22 April 2026 |
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Coen Bijns |
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BAP1 tumour predisposition syndrome - current knowledge and experiences from a national referral center |
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20 May 2026 |
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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 and/or complex 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