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There are 30 million Americans living with a rare disease – that’s 1 in 10. More than half are children. For 35 years, NORD has been leading the fight to improve the lives of patients with rare diseases. We do this by supporting patients and organizations, accelerating research, providing education, disseminating information, raising public awareness, and driving public policy. As we celebrate our 35th Anniversary, we look forward to the next 35 years and continuing our mission.

Help us commemorate this milestone and support NORD’s work for the rare disease community by making a donation today.

35 Years and Growing: NORD's Service to the Rare Disease Community

Since 1983, NORD has been leading the fight to improve the lives of patients with rare diseases. Check out our blog post which highlights 35 examples of how NORD impacts the rare disease community. 

Testimonials from Friends of NORD 

  • “NORD has been a beacon for us at PSC Partners. From being an organization that was growing alone, we are now an organization that is using all the cues, guidance and opportunities offered to us by NORD to create networks with stakeholders we couldn’t even dream of connecting with before. We hope we can give to other rare disease organizations all that we are learning from NORD.”
    –Rachel Gomel, PSC Partners
  • “I chose to become an ambassador to raise awareness and educate our elected officials of the many people in the Commonwealth of Virginia with rare diseases like two of my children and to put faces to these disorders. I want to ensure that this population in our state has appropriate access to medical expertise, treatment and services and economic support for costly expenses associated with rare disease or disorders” –Jana Monaco, Virginia Rare Action Network State Ambassador
  • “For both ATOF and myself, attendance to last year’s Summit changed our nonprofit and put us years ahead in research and collaborations with our medical partners. It is imperative we are able to participate again this year.  We are saving lives because of you.” Andrea Taylor, A Twist of Fate