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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 22 October 2025
The patient journey for Neurofibromatosis Type 1 has been updated and is now available on the ERN GENTURIS website:
Clinical experts can use the patient journey to explain the route/journey a genturis patient will take. The details of the patient’s personal journey will be filled in by the clinician (personalised care).
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Posted on 17 October 2025
The thematic group pages for Lynch syndrome and Polyposis syndromes on the ERN GENTURIS website have been updated to include the latest available knowledge.
A big thank you to Thematic Group 2 for their work and dedication, and a special shout-out to Manon Engels for the support and coordination behind the scenes!
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Posted on 3 September 2025
We are excited to launch the very first episode of the ERN GENTURIS podcast - GENTURIS Genes!
This new podcast series is dedicated to raising awareness and sharing expert knowledge on genetic tumour risk syndromes (GENTURIS).
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Pinned
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Upcoming Events and Webinars |
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