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Hong Kong Alliance for Rare Diseases

最後更新日期 Last Updated Date: 2019-09-29 22:30:52

服務 Service
服務範疇及簡介 Scope of Services & Highlight 增加香港罕病患者及家屬對疾病的認識,促進病友互助自助,活出豐盛人生。
Our aims are to enhance understanding of rare diseases among patients and their families; promote self-help and mutual support and positive attitude.
Promote public education on rare diseases, strengthen community awareness, understanding and supporting.
Ensure rare disease patients and their families’ needs and views are represented via policy advocacy and dialogues with Government authorities; leading to the formulation of proper support policies and services to address their needs in medical care, rehabilitation, education, welfare and social participation.
Support and assist in rare disease-related research study.
Unite rare disease stakeholders, promote collaboration and exchange.
Promote dialogues, consultation, and collaboration among related rare disease organizations in Hong Kong, Mainland China and overseas.
登記服務使用者人數 No. of Registered Service Recipients 350
服務單位總數 No. of Service Units 1