Abstract：
SLE presents significant challenges for patients and health-care professionals (HCPs), both across Europe and worldwide. Improving health-care outcomes for patients with SLE requires a comprehensive understanding of patient disease pathways. In particular, the geographical distance between SLE patients and specialized care centres, combined with the scarcity of rheumatologists, exacerbates delays in diagnosis and management. Also, the initial SLE symptoms can often be non-specific, and providing guidelines for primary HCPs and other non-specialists is extremely important. Improvement in access to treatment is also important, with several recently approved therapies for SLE not being available in several European countries and many low- and middle-income countries (LMICs). Furthermore, in the LMICs in which these treatments are available, they are not always covered by the health-care system, making their access almost impossible for those of lower socio-economic status. A number of provisions are already in place within the European Union, to improve access to care for patients with rare and complex diseases, including those with SLE. In particular, European Reference Networks (ERNs), such the ERN for Autoimmune Diseases ReCONNET, are virtual networks involving HCPs across Europe with the aim of improving the care of patients with rare and complex diseases that require highly specialized treatment and a concentration of knowledge and resources. In addition, lupus patient organizations such as Lupus Europe play a crucial role in raising awareness of SLE and advocating for improved access to care. Together, we can work towards a future where all people living with lupus receive the comprehensive and timely care they deserve.
摘要：
SLE对患者和医疗保健专业人员（HCP）提出了重大挑战，在欧洲和世界各地。改善SLE患者的医疗保健结果需要全面了解患者的疾病途径。特别是,SLE患者与专业护理中心之间的地理距离，再加上风湿病学家的匮乏，加剧了诊断和管理的延误。此外，最初的SLE症状通常是非特异性的，为主要的HCPs和其他非专业人员提供指导非常重要。改善获得治疗的机会也很重要，在几个欧洲国家和许多低收入和中等收入国家（LMICs），最近批准的几种SLE疗法都没有。此外，在这些治疗方法可用的LMIC中，他们并不总是被医疗保健系统覆盖，使社会经济地位较低的人几乎不可能进入。欧盟内部已经有一些规定,改善罕见和复杂疾病患者获得护理的机会，包括患有SLE的人。特别是,欧洲参考网络(ERN)，例如用于自身免疫性疾病的ERNReCONNET，是涉及欧洲HCP的虚拟网络，旨在改善需要高度专业化治疗以及知识和资源集中的罕见和复杂疾病患者的护理。此外,狼疮患者组织如欧洲狼疮在提高对SLE的认识和倡导改善获得护理方面发挥着至关重要的作用。一起,我们可以朝着未来努力，让所有患有狼疮的人都得到应有的全面及时的照顾。
