“患者旅程”是一種信息圖表概述，可直觀地顯示這種罕見病患者在護理方面的需求。由於“患者旅程”是從患者的角度設計的，因此臨牀醫生可以有效地滿足患者的需求。
“患者旅程”考慮到患者的需求在疾病的不同階段可能有所不同，例如初期症狀階段與治療階段。“患者旅程”還反映了患者個人的歷程，這些經歷可能因個人、診所和國家而異。
ERN-RND認爲“患者旅程”是患者和臨牀醫生可以共同使用的工作文件，可用於發現護理方案與護理需求之間的差距，認識到護理中的不足，調整護理方案，以更好地滿足這些疾病患者的需求。因此，“患者旅程”可被視爲患者系統性參與護理方案設計的第一步。
此外，“患者旅程”還是患者、家屬、非專科臨牀醫生和公衆瞭解這種罕見神經系統疾病患者的護理需求和護理方案的非常有用的資源。
遺傳性痙攣性截癱（HSPs）的“患者旅程”是與Adam Lawrence（英國HSP支持小組主席）和Lori Renna Linton（ERN-RND ePAG代表：共濟失調/HSP）共同開發的 (Euro-HSP).
您可以通過點擊圖像下載pdf 格式的信息圖表和表格，在此查找有關遺傳性痙攣性截（HSPs）的信息資料，瞭解“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.