Published August 17, 2020 by NORD
The COVID-19 pandemic has had a huge impact on the rare disease community. NORD has heard from countless patients over the last few months about how this crisis has added to the …
Continue reading “NORD Releases Four Guiding Principles on Telehealth Issues”
Read morePublished May 22, 2020 by NORD
At the head of the herd is… Emile Najm, Chief Executive Officer, KAT6A Foundation Emile most frequently checks his… Facebook account Emile advocates for those living with… A rare syndrome …
Continue reading “Head of the Herd: Emile Najm, KAT6A Foundation”
Read morePublished May 13, 2020 by NORD
NORD, KrabbeConnect and Partners for Krabbe Research invite you to register for an externally-led Patient-Focused Drug Development (EL-PFDD) virtual meeting on Krabbe disease, taking place Thursday, October 29, 12:30-4:30pm ET. …
Read morePublished April 28, 2020 by NORD
“…As we pull into the hospital, she starts screaming that she doesn’t want to be there, and she wants to be home… No matter how much her doctors want to …
Read morePublished April 24, 2020 by NORD
Between 25 and 30 million Americans have a rare disease, many of whom are disproportionately at risk of getting sick from COVID-19. According to the Centers for Disease Control and …
Continue reading “NORD Joins 400+ Groups to Prevent Discrimination During COVID-19 Triaging”
Read morePublished April 20, 2020 by NORD
In this time of crisis and uncertainty, NORD’s policy team has been working to pursue policies at the federal and state levels to address COVID-19 related concerns critical to the …
Continue reading “Update on NORD’s Recent Advocacy Work on COVID-19 for the Rare Community”
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 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 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 …
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