ERN-RARE-LIVER: European Reference Network

I am publishing this with permission of the moderators:

I am an active member of ERN-RARE-LIVER, a European Reference Network that covers 12 rare liver diseases, including PSC.

Here’s a good explanation from the Eurordis website:

European Reference Networks (ERNs) create a clear governance structure for knowledge sharing and care coordination across the EU. They are networks of centres of expertise, healthcare providers and laboratories that are organised across borders. A centre of expertise could be a clinical team, a medical centre or a hospital and must be formally accredited by its Member State.

It is unfeasible to create a separate ERN for every one of the over 6000 rare diseases that exist. ERNs should therefore be organised by groups of rare diseases. This grouping of diseases does not prevent a patient from being able to go to a disease-specific centre of expertise, nor from benefiting from the expertise of several ERNs.

Member States remain primarily responsible for the organisation and delivery of their healthcare; national participation in ERNs is therefore voluntary. When a healthcare centre does not have the required level of expertise to be part of an ERN as a centre of expertise it can participate as an associated or collaborative centre.

Due to the low prevalence and complexity of rare diseases, as well as to the nature of small and scattered patient populations, the system of ERNs that is being established can bring real added value to rare disease patients; ERNs aim to provide healthcare professionals with access to expertise that they may not be able to access in their country.

If no centre of expertise exists for a specific disease in their country, patients can still benefit from the knowledge that their doctor can get from centres of expertise in other countries. ERNs provide the structure that facilitates a doctor’s ability to access such knowledge across borders.

ERNs promote the sharing and mobility of expertise, rather than the movement of patients themselves across borders. Separately, the Directive on Patients’ Rights in Cross-Border Healthcare allows patients to access healthcare services abroad and to be reimbursed by their home country at the level foreseen within the national “basket of benefits”.

It is fair to say that our ERN will be beneficial to all patients and will be a big step forward in diagnosis and treatment for PSC. Just imagine living in a country where the hepatologist would like to consult a colleague as she/he e.g. suspects maybe a rare liver disease but can’t totally get her/his finger on it. THe hepatologist can now easily ask a group of colleagues for advice.
This is just one example of the perks of the ERN-RARE-LIVER. Having a close working relation between patients and clinicians and researchers in the rare liver field is another of the many advantages. And there will be a lot of good information available on PSC and PSC-related topics in the weeks and months to come.

In the weeks and months to come, I would like to update you on the progress.

And, right now we are already looking for PSCers and/or family members etc. who are interested in connecting with other PSCers in their country (In Europe!). Most of you know too well that there aren’t a lot of PSC/rare liver patient organisations out there. Our “priority” is the 28 countries (Memeber States, MS) of the European Union and the EEA countries.

Feel free to ask any questions you might have after reading about the ERNs.

Kindest regards