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「國際罕病聯盟」及「歐洲罕病協會」
財團法人罕見疾病基金會(台灣)

台灣罕見病基金會由草創時期,以建立罕病病友制度化福利服務,如罕病法推動、健保醫療給付等為訴求目標,使病友們享有基本的人權與尊重。到今天,基金會強調病友全人化的關懷服務,使病友在就學、就醫、就養、就業各方面獲得應有的尊重與關懷。

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罕見遺傳疾病一點通(台灣)

線上最完整,
罕見遺傳疾病中文資料庫

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中國罕見病發展中心

由罕見病發展中心主辦,致力成爲中國罕見病領域權威綜合信息平台和罕見病門戶網站。中國罕見病網發布和報道國內外罕見病醫學、研究、組織活動、政策等領域最新權威信息,建設罕見病百科、罕見病患者信息登記系統和中國罕見病醫療地圖三大核心數據庫。

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The National Organization for Rare Disorders (NORD) (USA)

The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

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Canadian Organization for Rare Disorders (CORD)

CORD is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.

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Rare Diseases Europe

EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 646 rare disease patient organisations in 60 countries.

We are the voice of 30 million people affected by rare diseases throughout Europe.

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