Asia Pacific Alliance of Rare Disease Organisaitons (APARDO)

APARDO is an umbrella organization whose members are organizations serving or advocating the rare disease community in the Asia Pacific. Its mission is to help member organizations improve treatment outcomes for those affected by rare diseases (including rare cancers) in the Asia Pacific region. Link

EURORDIS – Rare Diseases Europe (EURORDIS)

EURORDIS is a unique, non-profit alliance of 962 rare disease patient organisations from 73 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.

By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community... Link

Rare Disease International (RDI)

RDI is the global alliance of Persons Living with a Rare Disease of all nationalities across all rare diseases. Its mission is to be a strong common voice for people living with a rare disease around the world. Link

National Organisation for Rare Disorder (NORD)

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. Link

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。 Link