Published 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 27, 2021 by NORD
Washington, DC, January 27, 2021—Today, the National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN™) published the 6th Edition of the State Report Card, the annual report rating each state and Washington, DC on the …
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 …
Read morePublished December 16, 2020 by NORD
The Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) initiative will allow patient organizations to leverage the data they have collected to accelerate understanding of disease progression, clinical outcome measures and biomarkers …
Read morePublished December 9, 2020 by NORD
Natural history studies provide health care professionals and researchers with first-hand information about people living with rare diseases and give insight into how rare diseases present, progress over time and impact patients. Data sharing supports patients by helping …
Read morePublished December 3, 2020 by NORD
As the primary benefactors of drugs that treat rare diseases, patients and caregivers must play a role in the drug development process. Patients and caregivers bring a human perspective to the drug development process …
Read morePublished November 18, 2020 by NORD
Washington, DC, November 18, 2020—With a mission of empowering and equipping the rare disease community to effectively engage decision-makers within their state governments, the National Organization for Rare Disorders (NORD®) has launched an initiative that will assist in …
Continue reading “NORD Launches Project RDAC, Announces Inaugural Meeting on December 16”
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