About Rare DiseasesLocal Rare Disease Patient Groups
  • 香港視神經脊髓炎協會

    香港視神經脊髓炎協會是一個專為香港「視神經脊髓炎」 (NMO) 患者及其家屬而設的互助組織,於2021年11月22日成立,2023年6月29日成為獲稅務轄免的慈善組織。致力提供最新NMO醫學資訊,增加病友醫護知識;關心病人與照顧者心理健康;連繫病友,凝聚力量,互相支持拱托;及喚起公眾對罕見病關注,認識NMO。 Link
  • Hand in Hand Association

    So here at Hand in Hand, we want to provide a platform for children with congenital upper limb differences, together with their parents in Hong Kong, to grow together and support each other. We strive to build productive relationships and make a positive impact with all of our pursuits. At the same time, we wish to share useful resources from professionals in Hong Kong and similar support groups around the world. Link
  • Hong Kong Leiomyosareoma Foundation

    平滑肌肉瘤是一罕見癌症。透過專頁、希望可以聯繫香港的病友們及照顧者,大家可以交流資訊,互相支持。亦希望其他人仕對這個疾病多一點認識。 Link
  • The Hong Kong HAE Patient Group

    The Hong Kong HAE Patient Group (“hae hk”) has been formed in 2019 to support patients with hereditary angioedema (“HAE”) and their families to create awareness, provide education, and gain access to modern treatments so that HAE patients can enjoy a higher quality of life. Link
  • Primary Immunodeficiency League

    PIDL(勉逆歷) 是一個病人和家屬的非牟利組織,我們致力於建立病人及家屬互相認識的平台,實踐互相分享,病人自助。勉逆歷希望透過這平台能夠提高社會及醫療界對PID的認識及關注,讓所須的患者能夠及早確診以便接受適當的治療。透過團結,我們希望能夠為PID患者爭取更好的治療和促進PID的醫學研究。 Link
  • Alstrom 綜合症大中華協會


    協會希望組織起來,找出更多患者,得到更多案例,使醫學界及藥廠能有更多關注,也為患者家庭給予更多支援。 Link