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Welcome to ERN GENTURIS

WHO WE ARE

 

 

OUR EXPERTS

 

PATIENTS AREA

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:

 

 

 

How to refer a patient to ERN GENTURIS?

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Further information is available here.

 

 

Latest news

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Pinned

European Reference Networks support Ukraine

All 24 European Reference Networks (ERNs) launched a dedicated website (https://www.rarediseaseshub4ua.org/) and social media campaign (#ERNcare4Ua) to collect information to help health professionals find support for Ukrainian patients with rare diseases: diagnosis, treatment, advice.

 

In addition, the Coordinators of the 24 European Reference Networks (ERNs) have issued a statement to support people with Rare Diseases and Complex Conditions affected by the war in Ukraine.

 

If you are a patient with a genetic tumour risk syndrome coming from Ukraine or a treating physician and you require medical assistance, please contact us at: genturis@radboudumc.nl.

 

WE ARE HERE TO HELP!

 

 

DETAILS

 

 

 

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Posted on 22 March 2023

Invitation for Solve-RD Public Symposium on April 26, 2023: The Impact of Solve-RD on Research & Care of Rare Disease Patients

We would like to invite you to our Public Symposium at the Solve-RD Final Meeting 2023: The Impact of Solve-RD on Research & Care of Rare Disease Patients!

The programme is available here and you can register for the symposium here.

Date: 26 April 2023

Time: 8:30-12:30 CEST

Location: Prague, Czech Republic & online

Website: https://solve-rd.eu/solve-rd-final-meeting-2023/

 

 

 

DETAILS

 

 

 

 

Posted on 16 February 2023

EJP RD – ERN Workshop: Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)

In the context of EJP RD’s ERN Workshops, a workshop entitled “Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)” is being organized by ERN GENTURIS member Arvids Irmejs from Pauls Stradins Clinical University Hospital.

 

  • The in-person event will take place on 27-28 April 2023 in Riga, Latvia.
  • Registration is open here and closes on March 8th.

 

 

DETAILS

 

 

  

 

Posted on 16 February 2023

EJP RD – ERN Workshop: Desmoid tumors (DTs) in patients with Familial Adenomatous Polyposis (FAP): an interdisciplinary approach

In the context of EJP RD’s ERN Workshops, a workshop entitled “Desmoid tumors (DTs) in patients with Familial Adenomatous Polyposis (FAP): an interdisciplinary approach” is being organized by ERN GENTURIS member Dr Marco Vitellaro:

 

  • The in-person event will take place on 22-23 May 2023 at Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, in Milano, Italy.
  • Registration is open here and closes on March 31st.

 

 

DETAILS

 

 

 

Upcoming Events and Webinars

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Marc Tischkowitz and Judith Balmaña
Mainstreaming – method or madness?

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26 April 2023

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Rolf Sijmons, MD, PhD
Liquid biopsy: the future of surveillance in individuals with inherited cancer predisposition?

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10 May 2023

D. Gareth Evans
New ERN GENTURIS NF1 guidelines and update on NF2 and SCHWN nomenclature

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7 June 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