Espace patients

For patients

European Patient Advocacy Groups

Patient organisations can become member organisations of the ERN GENTURIS European Patient Advocacy Group (ePAG).


Patient associations

A non-exhaustive list of patient associations for genetic tumour risk syndromes in EU member states can be found here.


Patient Journeys

ERN GENTURIS Members and patient representatives have developed an innovative visual approach for the clinical pathway of patients with rare diseases: “Patient Journeys”.


Find a HCP

The current list of participating healthcare providers covers 22 EU Member States and Norway.


Patient referral

Patients cannot refer themselves into ERNs. A patient may only be referred by the clinician treating them in their home member state. For the process how your clinician can refer you to ERN GENTURIS, click here.


What to expect from a visit at the genetic service?

The website provides information for people who are considering having a genetic test to look for an inherited cause of cancer.



Cross-border healthcare

One of the key objectives of the ERN is to provide cross-border healthcare which means that as a patient you can access expert healthcare services in another EU country, which is not your home country. According to the European Commission, "EU citizens have the right to access healthcare in any EU country and to be reimbursed for care abroad by their home country".

Information about national contact points, health insurance institutions and healthcare providers can also be found on the European Commission's website.