To help rare disease community members who are having trouble acquiring quality, vetted PPE, the National Organization for Rare Disorders (NORD)® is collaborating with the nonprofit Project N95 so you can purchase N95 respirators (certified by CDC and NIOSH), nitrile powder free gloves, Level 1 AAMI… Read More
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 the Advisory Committee on Immunization Practices (ACIP) regarding the lack of clear vaccination prioritization guidance to the states for rare… Read More
I was diagnosed with primary immunodeficiency (PI) when I was four years old. The adversities I have faced with rare disease started even before I received a life-saving diagnosis and are still something I struggle with today. In studying to be a health care
In its February 2021 issue, PharmaVOICE features NORD in its Rare Disease Showcase column. In “Rare Disease: Tackling the Barriers to Rare Disease Treatment,” NORD’s Undiagnosed Patients Registry and the COVID-19 Community Survey Report are referenced. In “The State of Rare Disease, Diagnosis, and Treatment,” the Barriers to Rare Disease… Read More
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 living with rare diseases and accompanying life-altering issues that are
