捐助支持
加入本會
登記做義工
捐助支持
加入本會
登記做義工
About Rare DiseasesLocal Rare Disease Patient Groups
-
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
想要保持身體健康，日常生活除了注意個人衛生、均衡飲食和勤做運動，還要依靠我們的免疫系統，以抵禦病原體入侵。當我們的免疫系統出現問題，便有如失去了最大的保護屏障。現時香港約有200名免疫缺陷患者，雖然他們的生命時常受到威脅，但靠著團結互助的力量，希望令大眾認識這個罕見病，以拯救更多生命! Link -
Alstrom 綜合症大中華協會
協會會員是一群在大中華區患者家庭，來自中國內地，香港，澳門和台灣。
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
