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Large Patient Group Organizations
  • CORD (Canadian Organization of Rare Disorders)
    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.
  • EURORDIS
    EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 779 rare disease patient organisations from 69 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.
  • Global Genes
    Global Genes® is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community.
  • NORD [National Organization of Rare Disorders (U.S.)]
    NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.
  • Rare Disease Foundation
    The Rare Disease Foundation is focused on linking basic science and clinical practice to increase the efficiency of rare disease research.

Recent Posts

  • COVID-19 and the Rare Disease Community
    COVID-19 and the Rare Disease Community
    May 28, 2020 | Stories
  • Free Online Concert This Weekend to Support MS Research
    Free Online Concert This Weekend to Support MS Research
    May 20, 2020 | Stories
  • Twitter Tips For Patient Groups
    Twitter Tips For Patient Groups
    May 12, 2020 | Stories, Zeal Tips
  • Social Media as a Patient Advocacy Tool during COVID-19 Pandemic
    Social Media as a Patient Advocacy Tool during COVID-19 Pandemic
    May 7, 2020 | Stories, Zeal Tips
  • Rare Disease Webinars Focused on Covid-19
    Rare Disease Webinars Focused on Covid-19
    Apr 5, 2020 | Stories

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