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Archives for: June 21st, 2021

Continuing the Conversation: FDA and CDC Leaders Discuss Vaccines and the Pandemic

Written by Rohan Narayanan on June 21, 2021

The National Organization for Rare Disorders (NORD), along with The ALS Association, the Cystic Fibrosis Foundation, and the Muscular Dystrophy Association recently partnered again to host a virtual conversation on COVID-19 vaccines and safety. The event featured leaders from the US Food and Drug Administration (FDA) and the Centers for Disease Control and Prevention (CDC) providing key updates and insights from the administration, as well as addressing frequently asked… Read More

Save On Quality, Vetted PPE with NORD and Project N95

Written by Valaree DonFrancesco on March 23, 2021

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

NORD and Other Patient Advocacy Groups Issue Letter on Lack of Clear COVID-19 Vaccination Prioritization Guidance to the States for Rare Disease Patients

Written by Heidi Ross on February 17, 2021

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

Ashlee’s Story in Honor of Rare Disease Day

Written by Valaree DonFrancesco on February 12, 2021

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 Read More

NORD Featured in February 2021 Issue of PharmaVOICE

Written by Valaree DonFrancesco on February 2, 2021

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