Published February 22, 2021 by NORD
I faced lot of challenges both socially and academically throughout my life. However, with a lot of love from my mother and godly mentors, I was able to overcome many …
Continue reading “Hudson’s Story in Honor of Rare Disease Day”
Read morePublished February 22, 2021 by NORD
Tristan Lee, a 37-year-old Pennsylvania man who has lived with sickle cell disease since birth, is a patient advocate with Sickle Cell Disease Association of America, a NORD member organization. …
Read morePublished February 19, 2021 by NORD
Sometimes a helping hand is most needed when an unexpected emergency arises. NORD is committed to supporting rare disease patients and families and offers several programs to assist them in times of crisis. NORD’s Hurricane and Natural Disaster Emergency Relief Fund provides financial …
Read morePublished February 19, 2021 by NORD
At the Head of the Herd is… Chandra Clark, Executive Director, VHL Alliance. Today she shares her passion for incorporating diversity, equity, and inclusion within the rare disease space. Prior to …
Continue reading “Head of the Herd: Chandra Clark, VHL Alliance”
Read morePublished February 17, 2021 by NORD
On February 17th, NORD, along with The ALS Association, Muscular Dystrophy Association, and Cystic Fibrosis Foundation, sent a letter to Centers for Disease Control and Prevention (CDC) Director Walensky and …
Read morePublished February 9, 2021 by NORD
As the saying goes, knowledge is power. It is vital that people directly impacted by the more than 7,000 rare diseases are armed with the knowledge and information they need …
Continue reading “NORD Launches Rare Disease Educational Support Program”
Read morePublished January 28, 2021 by NORD
Washington, DC, January 28, 2021— Even with the world acutely aware of public health matters in light of the COVID-19 pandemic, there are millions in the United States and around the globe …
Read morePublished January 26, 2021 by NORD
Washington, DC, January 26, 2021—In an effort to provide clear, useful, authoritative information to rare disease patients and caregivers on the COVID-19 vaccines, on January 15 the National Organization for Rare Disorders (NORD®), along with The ALS Association, Cystic Fibrosis Foundation and Muscular …
Read morePublished December 22, 2020 by NORD
After more than a year of negotiations in Congress and advocacy from NORD and patient coalition partners, lawmakers on Capitol Hill have passed legislation to protect patients from surprise medical …
Read morePublished December 17, 2020 by NORD
In a 12.16.2020 article from STAT on how shortages of protective gear pose a continued threat to some rare disease patients, NORD’s COVID-19 Community Survey Report is highlighted and NE …
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