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Rare Disease Day

NORD is the official US sponsor of Rare Disease Day, which occurs on the last day of February each year.  On Rare Disease Day, millions of patients and their families around the world share their stories to promote awareness of the challenges, hopes and needs of those living with rare diseases.

The day was launched in Europe in 2008 by EURORDIS, and is now observed in more than 65 nations. In the U.S., the coalition working with NORD to support Rare Disease Day includes patient organizations, NIH and other government entities, medical researchers, hospitals and schools, universities and pharmaceutical companies developing treatments for rare diseases.

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The next Rare Disease Day is February 28, 2018. Save the date! 

Visit the official US Rare Disease Day website to get involved. 

Rare Disease Day

Suggested Activities for Patient Organizations

We invite all US-based patient organizations partner with us to observe Rare Disease Day here in the United States.

  • Become a Rare Disease Day partner
  • Write your representatives to tell them why rare diseases are important to you
  • Post stories about Rare Disease Day in your organization’s newsletter
  • Host an event in your area or take part in events near you
  • Get involved in a State House event
  • Launch a disease-specific awareness campaign leveraging this year’s international theme

An International Effort

Visit EURORDIS’ Rare Disease Day website to see the global successes from 2015. Visit website >