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香港罕見疾病聯盟
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。
推動公眾教育工作,增強社會對罕病關注、了解和支持。
透過政策倡議工作,反映患者意見,促請政府制訂罕病支援政策,謀求患者在醫療、復康、教育、福利及社會參與等方面,獲得適當的制度保障。
支持及協助學術研究。
團結香港罕見疾病持份者,加強交流合作。
促進本港及世界各地罕病組織的溝通、諮詢和合作。
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