“患者旅程”是一种信息图表概述，可直观地显示这种罕见病患者在护理方面的需求。由于“患者旅程”是从患者的角度设计的，因此临床医生可以有效地满足患者的需求。
“患者旅程”考虑到患者的需求在疾病的不同阶段可能有所不同，例如初期症状阶段与治疗阶段。“患者旅程”还反映了患者个人的历程，这些经历可能因个人、诊所和国家而异。
ERN-RND认为“患者旅程”是患者和临床医生可以共同使用的工作文件，可用于发现护理方案与护理需求之间的差距，认识到护理中的不足，调整护理方案，以更好地满足这些疾病患者的需求。因此，“患者旅程”可被视为患者系统性参与护理方案设计的第一步。
此外，“患者旅程”还是患者、家属、非专科临床医生和公众了解这种罕见神经系统疾病患者的护理需求和护理方案的非常有用的资源。
遗传性痉挛性截瘫（HSPs）的“患者旅程”是与Adam Lawrence（英国HSP支持小组主席）和Lori Renna Linton（ERN-RND ePAG代表：共济失调/HSP）共同开发的 (Euro-HSP).
您可以通过点击图像下载pdf 格式的信息图表和表格，在此查找有关遗传性痉挛性截（HSPs）的信息资料，了解“患者旅程”。
We thank Louis Lim and his mother, Luo Wen Juan, for translating the Patient Journey into Simplified and Traditional Chinese.
Louis, a third-year medical student at the University of New South Wales, Sydney, became involved in the RARE Compassion Program by Global Genes, where he had the privilege of meeting Lori Renna Linton. From her, he gained profound insights into Hereditary Spastic Paraplegia (HSP) and developed a profound appreciation for the importance of learning about and raising awareness for rare diseases: “I was thrilled to be part of the translation project and saw it as an opportunity to enlighten others, including my mother, about the importance of rare diseases.”
They hope that their dedication and commitment in undertaking this translation will be beneficial in bridging language barriers and expanding access to such valuable information within the Chinese-speaking community.