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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: 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:
Latest news |
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Posted on 5 June 2023
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Posted on 31 May 2023
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Posted on 31 May 2023
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Upcoming Events and Webinars |
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D. Gareth Evans |
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New ERN GENTURIS NF1 guidelines and update on NF2 and SCHWN nomenclature |
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7 June 2023 |
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Marieke de Laat |
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Von Hippel-Lindau disease - the endocrinologist’s perspective |
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22 June 2023 |
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Elke Holinski-Feder |
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Lynch syndrome update |
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6 September 2023 |
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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