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Mar. 13, 2020

TOPIC: Featured News, Advocacy, Events, Rare Disease Day

Rare Disease Day 2020 Advocacy Events Recap

Posted by Valaree DonFrancesco

In 2009, NORD was invited to join the official Rare Disease Day campaign, led internationally by EURODIS. Since then, NORD has been the official US sponsor of Rare Disease Day, driving the annual campaign in the states, hosting advocacy events across the country and bringing the rare disease community together to promote awareness and help improve the lives of over 25 million Americans living with rare diseases. 

This year, patients, families, caregivers, medical professionals, NORD staff and other stakeholders participated in over 25 Rare Disease Day advocacy events in 23 states. Patients and families were able to connect with one another and educate the public and elected officials about the challenges they face and how they can make a difference in the lives of people impacted by rare disease.

Among the topics discussed at this year’s events was NORD’s 5th Edition State Report Card, which evaluates the states and Washington, DC on nine critical issues affecting the community. Check it out at

If you are interested in learning more about Rare Disease Day events in your state for 2021, be sure to join the Rare Action Network.