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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 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 27 June 2025
The CPMS 2.0 Mobile App was released last week and is now available in the Google and Apple app stores as “EU CPMS 2.0.
The app is very easy to use and simplifies the login process as the CPMS app automatically interfaces with your EU login app to facilitate login.
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Posted on 2 June 2025
In this ERN GENTURIS spotlight we introduce the new ERN GENTURIS ePAG chair, Darja Molan. In addition to her role in ERN GENTURIS, Darja is president of Europa Donna Slovenia, a patient organization that supports women with breast and gynaecological cancers, and chair of the Patient Council at the Oncology Institute in Ljubljana
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Posted on 28 May 2025
A single asymptomatic sperm donor, carrying a mosaic TP53 variant associated with Li-Fraumeni Syndrome, unknowingly passed on a cancer predisposition to multiple offspring across Europe between 2008 and 2015. ERN GENTURIS played a central role in identifying and coordinating responses across 5 countries (6 members of our ERN), following genetic counseling requests and subsequent reclassification of the TP53 variant as likely pathogenic.
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Posted on 30 April 2025
In the latest edition of our spotlight interviews, we introduce the new ERN GENTURIS coordinator, Marjolijn Ligtenberg, together with the ERN GENTURIS co-chairs, Marleen Kets and Chella van der Post.
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Pinned
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Upcoming Events and Webinars |
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Pernille Axél Gregersen |
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Heritable retinoblastoma – long-term follow-up and care |
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8 October 2025 |
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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