Frequently asked questions
Your doctor remains your single point of contact if you are referred to an ERN. Yet, they will have access to the ERN expertise, can share data, collect the experts’ input and discuss it with you at every step of the diagnosis and treatment. Please note that each country has specific rules and arrangements for the referral of patient cases to other specialists, and notably to ERNs. The CPMS platform is one of the most important tools implemented by the ERN. It allows your doctor or hospital to discuss rare cases with specialists from other countries who may have more experience than they do. In this way, the expertise comes to the patient. Your data is only entered into this system with your explicit written consent. Specific measures protect and safeguard personal data, in accordance with European data law. In addition, you may agree for your data to be used for research purposes and/or to set up registries, which will help to research and fill knowledge gaps in the field.
R-Liver is the prospective registry of ERN RARE-LIVER, which currently focuses on autoimmune liver diseases AIH, PBC, PSC and polycystic liver disease. Other registries will become ERN RARE-LIVER registries in the future, either as separate registries or incorporated into R-LIVER.
Your doctor remains your single point of contact and can refer you to a specialist centre. Please note that each country has specific rules and arrangements for the referral of patient cases to other specialists, and notably to ERNs. For the list of centres click "here":/patients/understand-your-diagnosis