Published April 23, 2020 by NORD
The current COVID-19 pandemic necessitates a new approach to many aspects of life—particularly those that involve gathering together. The health and well-being of people living with rare diseases, their loved …
Read morePublished March 23, 2020 by NORD
Editor’s Note: The VHL Alliance’s Jeffersonian Dinner described below took place in early March. As we now practice social distancing in light of COVID-19, in-person events of this nature should …
Continue reading “NORD Member VHL Alliance Held Jeffersonian Dinner in Early March”
Read morePublished March 16, 2020 by NORD
The health and safety of the rare disease community is always our top priority at NORD. With that in mind, the Living Rare, Living Stronger NORD Patient and Family …
Continue reading “NORD Announces Important Update Regarding the 2020 Living Rare Forum”
Read morePublished March 13, 2020 by NORD
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, …
Continue reading “Rare Disease Day 2020 Advocacy Events Recap”
Read morePublished March 11, 2020 by NORD
If you or someone you love is diagnosed with a rare disease, you might find yourself on a very quick learning curve about the disease (or about the lack of …
Read morePublished March 3, 2020 by NORD
NORD is proud to welcome Sing Me a Story to the upcoming 2020 Living Rare, Living Stronger Forum in Cleveland, Ohio, where the ideas of children living with rare diseases will be turned into song! This opportunity …
Read morePublished February 11, 2020 by NORD
Washington, DC, February 11, 2020—The National Organization for Rare Disorders (NORD®) has announced this year’s roster of rare disease change-makers, the 2020 Rare Impact Award honorees. These exceptional individuals, organizations …
Read morePublished November 12, 2019 by NORD
I attended the NORD 2019 Summit in Washington, DC a few weeks ago. It was my first chance to attend this conference organized by the National Organization for Rare Disorders …
Continue reading “Reflections of a First Time NORD Summit Attendee: Matthew’s Story”
Read morePublished October 29, 2019 by NORD
On the heels of the 2019 Rare Diseases and Orphan Products Breakthrough Summit, NORD’s Rare Action Network (RAN) Volunteer State Ambassadors made their way to Capitol Hill on October 23, …
Continue reading “NORD’s Rare Action Network Mobilized for a Successful Hill Day”
Read morePublished October 23, 2019 by NORD
Health and Human Services Secretary Alex Azar speaking at the NORD Summit on October 22, 2019 Washington, DC, October 23, 2019–Earlier this week, the National Organization for Rare DisordersⓇ …
Continue reading “2019 NORD Summit Breaks Records with Largest Attendance Ever!”
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