Published 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 21, 2020 by NORD
#NORDinthenews NORD is featured as a rare disease resource and Dr. Marshall Summar, Chairman of NORD’s Board of Directors, is quoted extensively in an article published by US News and …
Read morePublished March 20, 2020 by NORD
The health and safety of those with rare diseases and their caregivers are always our top priorities at the National Organization for Rare Disorders (NORD). We know our members are …
Continue reading “COVID-19 Resources for Non-profit Leaders and the Community”
Read morePublished March 20, 2020 by NORD
Head of the Herd: Michele Sloan, Foundation to Fight H-abc At the head of the herd is… Michele Sloan, Director, Foundation to Fight H-abc Michele most frequently checks her… Facebook …
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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 16, 2020 by NORD
#NORDinthenews NORD’s Associate Director of Advocacy Kristen Angell and Director of Research Programs Vanessa Boulanger were featured in an article in the Newtown Bee (Newtown, CT) on prevalence and other …
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 6, 2020 by NORD
At the head of the herd is… Akiva Zablocki, President, The Hyper IgM Foundation Akiva most frequently checks his… https://www.facebook.com/Akiva Akiva advocates for those living with… hyper IgM syndrome Akiva …
Continue reading “Head of the Herd: Akiva Zablocki, The Hyper IgM Foundation”
Read morePublished March 5, 2020 by NORD
As information on the coronavirus, COVID-19, dominates the news, we want to share with you guidance from the Centers for Disease Control and Prevention (CDC).
Read morePublished February 29, 2020 by NORD
I suffer from neuromyelitis optica, or NMO disease (sister of MS, also known as Devic syndrome) and chronic pain. I experienced my first attack in the summer and now am …
Continue reading “Savannah’s Story in honor of Rare Disease Day”
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