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  • Paroxysmal Nocturnal Hemoglobinuria (In Chinese only)

    Number: 003

    Publication date: 2021/10/21

    Content description: 陣發性夜間血紅素尿症(Paroxysmal Nocturnal Hemoglobinuria;PNH)是一種罕見而複雜血液疾病。患者的主要的症狀為慢性溶血、造血機能異常及血栓等問題,可引起腎功能受損、血管栓塞、骨髓造血功能不良等情況。

    本小冊子由香港藥學服務基金與罕盟協力製作。

  • Familial Amyloid Polyneuropathy (In Chinese only)

    Number: 002

    Publication date: 2018/12/15

    Content description: FAP(Familial Amyloid Polyneuropathy,澱粉樣多發性神經病變)是一種罕見的家族染色體顯性遺傳疾病,因為某些蛋白的基因突變,導致其結構出現變化,使得這些原本為水溶性的蛋白形成澱粉纖維在細胞外沉積而致病。

    本小冊子由FAP(家族性澱粉樣多發性神經病變)病人互助小組及香港罕見疾病聯盟製作。

  • About Rare Disease Hong Kong

    Number: 001

    Publication date: 2020/06/01

    Content description: Established in December 2014, Rare Disease Hong Kong (RDHK), is a charitable institution recognized by the government (ref. no.: 91/16233). It is first patient group in Hong Kong comprising cross-rare-disease patients and their families with the support of experts and academics in the field. You can learn more about us and rare diseases from this leaflet.

    This leaflet was published by Rare Disease Hong Kong.