Established in December 2014, Rare Disease Hong Kong (RDHK), formerly known as the Hong Kong Alliance for Rare Diseases, 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.

We represent patients and caregivers, aiming to improve related policies and services, promote public education on rare diseases, and strengthen the community’s support for patients in order to ensure equal respect and protection for patients in terms of fundamental rights such as healthcare, social support and daily needs.

Topics across this leaflet: (1) What is a rare disease, (2) Definition of Rare Diseases, (3) Characteristics of Rare Diseases, (4) Challenges Encountered by Patients with Rare Disease and their Caregivers.