About Rare DiseasesInternational Rare Disease Patient Groups
  • 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
  • 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