Established in December 2014, Rare Disease Hong Kong (formerly known as Hong Kong Alliance for Rare Diseases; HKARD) is the first patients’ group in Hong Kong comprising cross-rare-disease patients and their families with the support of experts and academics in the field.
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Its objectives are to rally supporters to spearhead and improve related policies and services, promote public education on rare diseases, and strengthen the community’s support for patients in order to ensure respect and protection for patients in terms of such fundamental rights as healthcare, social support, education, and daily needs equal to other citizens.
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Core values: respect differences and protect the rights of rare disease patients
Core duties: advocate for policy change, increase awareness and build expertise
Management philosophy: frugal use of resources and emphasis on effective action
Management principles: transparent and accountable leadership
“Rare is many, rare is strong and rare is proud.”