Rare Disease News

Recognizing Abbey Meyers, NORD Founder and Mother of a Movement

Published May 12, 2023 by NORD

Categorized in -

On this Mother’s Day, NORD would like to recognize the rare disease “Mom” who 40 years ago, brought us all together to where we are today. Abbey Meyers is the …

Continue reading “Recognizing Abbey Meyers, NORD Founder and Mother of a Movement”

NORD Announces 2023 Rare Impact Award Honorees and 40th Anniversary Celebration

Published February 27, 2023 by NORD

Categorized in -

May 4 Ceremony in Washington, DC will honor rare disease innovators, advocates, and partners as part of NORD’s 40th Anniversary Celebration Washington, DC, February 27, 2023—National Organization for Rare Disorders …

Continue reading “NORD Announces 2023 Rare Impact Award Honorees and 40th Anniversary Celebration”

Highlights from the 2022 NORD Breakthrough Summit

Published November 1, 2022 by NORD

Categorized in -

Last month, more than 830 enthusiastic attendees gathered in-person (and many more virtually) for the 2022 NORD Rare Diseases and Orphan Products Breakthrough Summit to address and take action on …

Continue reading “Highlights from the 2022 NORD Breakthrough Summit”

NORD Highlights New Era of Innovation and Public Health Awareness in Virtual 2020 Rare Diseases and Orphan Products Breakthrough Summit

Published October 9, 2020 by NORD

Categorized in -

Washington, DC, October 9, 2020—On October 8 and 9, the National Organization for Rare Disorders (NORD®) virtually hosted the 2020 Rare Diseases and Orphan Products Breakthrough Summit, the first time the organization representing over 25 million Americans impacted …

Continue reading “NORD Highlights New Era of Innovation and Public Health Awareness in Virtual 2020 Rare Diseases and Orphan Products Breakthrough Summit”

The 2020 Living Rare, Living Stronger Forum Will Now Be Presented As A Virtual Event

Published April 23, 2020 by NORD

Categorized in -

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 …

Continue reading “The 2020 Living Rare, Living Stronger Forum Will Now Be Presented As A Virtual Event”

NORD Member VHL Alliance Held Jeffersonian Dinner in Early March

Published March 23, 2020 by NORD

Categorized in -

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”

NORD Announces Important Update Regarding the 2020 Living Rare Forum

Published March 16, 2020 by NORD

Categorized in -

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”

Rare Disease Day 2020 Advocacy Events Recap

Published March 13, 2020 by NORD

Categorized in -

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”

Rare Disease Day 2020 and the Mission I Choose to Accept, by Debbie Drell, Director of Membership for NORD

Published March 11, 2020 by NORD

Categorized in -

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 …

Continue reading “Rare Disease Day 2020 and the Mission I Choose to Accept, by Debbie Drell, Director of Membership for NORD”

NORD Announces Sing Me a Story Raffle for Upcoming Living Rare, Living Stronger Patient and Family Forum

Published March 3, 2020 by NORD

Categorized in -

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 …

Continue reading “NORD Announces Sing Me a Story Raffle for Upcoming Living Rare, Living Stronger Patient and Family Forum”