About Rare DiseasesLocal Rare Disease Patient Groups

-
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
-
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 (“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
-
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
-
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
-
香港首個專為虹膜炎/葡萄膜炎同路人而設的互助組織。
旨在鼓勵大家風雨同路,以心代眼,透過助人自助,令同路人用正面積極態度與虹同行
Link