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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 24 March 2025
EURORDIS just published the latest results of the Rare Barometer survey on the impact of living with a rare disease, 133 respondents with a rare genetic tumour risk syndrome replied to the survey.
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Posted on 12 March 2025
The updated ERN GENTURIS care pathway on Hereditary Breast and Ovarian Cancer Syndrome (HBOC), the new care pathway on Constitutional Mismatch Repair Deficiency (CMMRD) and the new ERN GENTURIS patient journey on Birt-Hogg-Dubé syndrome (BHD syndrome) have just been published!
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Posted on 28 February 2025
The ERN GENTURIS members have united in support of Rare Disease Day, February 28, 2025. Together, we raise awareness and advocate for those impacted by genetic tumour risk syndromes. For the occasion of Rare Disease Day, the European Commission published a booklet celebrating the dedication and expertise of the European Reference Networks, which make a tangible difference in the lives of patients with rare diseases and their families, as well as two new factsheets.
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Pinned
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Upcoming Events and Webinars |
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Sophie Frank |
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Use of hormones in BRCA carriers: hormonal replacement therapy, oral contraception, ovarian stimulation – is it safe? |
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24 April 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