Patients with rare diseases are often disadvantaged, particularly those with rare liver diseases. Reasons for disadvantage include delayed or overlooked diagnosis, lack of local expertise and high-quality care, poor scientific understanding of the disease process and limited therapeutic options. In adult liver disease this can be compounded by prejudices towards patients with liver disease in general, because of a perception (incorrect for all rare liver diseases) that liver disease is lifestyle related and thus "self-inflicted". In paediatric rare liver diseases, such as biliary atresia, optimising outcomes requires a particularly timely diagnosis. Irrespective of patient age, the scientific and medical community must rise to the challenge of advancing our understanding of rare liver disease, searching for more effective and specific therapies, and providing the infrastructure to provide the best care for all patients, infants, children, young and older adults. The European Reference Network for Rare Liver Diseases is an important step in this direction.

中文翻译：

---

获得罕见肝病的护理：新挑战和新机遇

罕见病患者往往处于不利地位，尤其是患有罕见肝病的患者。不利的原因包括延迟或被忽视的诊断、缺乏当地专业知识和高质量的护理、对疾病过程的科学认识不足以及治疗选择有限。在成人肝病中，通常对肝病患者的偏见会加剧这种情况，因为人们认为肝病与生活方式有关，因此是“自己造成的”（对于所有罕见的肝病都是不正确的）。在小儿罕见的肝病中，例如胆道闭锁，优化结果需要特别及时的诊断。无论患者年龄如何，科学和医学界都必须迎接挑战，提高我们对罕见肝病的认识，寻找更有效和更具体的疗法，并提供基础设施，为所有患者、婴儿、儿童、年轻人和老年人提供最佳护理。欧洲罕见肝病参考网络是朝着这个方向迈出的重要一步。