Weekly issue 2026-W38 ·
Patient pathways for rare liver diseases: a European template developed by ERN RARE-LIVER
Plain language
People with rare liver conditions, including polycystic liver disease, often face slow diagnosis and scattered care. The European reference network for rare liver diseases, working with patients and patient groups, built a template for clear care pathways: before diagnosis, at diagnosis, during treatment and over the long term. Each pathway includes plain explanations, common questions and ‘10 key questions’ to discuss with your doctors. Polycystic liver disease is one of the first worked examples.
Clinical note
ERN RARE-LIVER consensus template (hepatologists, specialist nurses, patient representatives, EURORDIS) structured on four journey phases: pre-diagnosis, diagnosis, management, long-term follow-up. Includes disease-specific sections, education resources, FAQs and ‘10 key questions’ for shared decision-making; worked pathways for PLD, non-cirrhotic portal vein thrombosis and portosinusoidal vascular disorder. Implementation, usability and outcome impact not yet evaluated — useful referral and patient-education resource for PLD.
Question for your next visit
Is there a specialist liver centre or patient pathway for polycystic liver disease that I could be referred to?