A patient with a rare or complex disease may struggle to find a healthcare provider with relevant clinical expertise. To address this, the EU created European Reference Networks (ERN) in 2017. These are networks of institutions and healthcare providers. They are organised across borders, facilitate the sharing of knowledge, resources and expertise throughout the EU. The goal is to lead to improved care for people living with rare disorders.
Under a 2011 EU directive, EU citizens are entitled in certain cases to travel to other EU countries for medical care and reimbursement. ERN are encompassed by this directive. Your healthcare provider will be able to discuss with you whether travelling for treatment is an option in your case, and what it will mean logistically for your future care if you do. The decision will be informed by the expertise of the ERN, but ultimately will be made between you and your clinician.
You can find more information on the European Commission's page on European Reference Networks.
