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Archives for: March 31st, 2021

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

Season Two PREMIERE with CEO Peter Saltonstall

Written by Valaree DonFrancesco on March 3, 2021

It is Season Two of NORDPod, and we’re kicking it off in style with a “Last Year Tonight”-themed episode with NORD’s President and CEO, Peter Saltonstall, from his undisclosed bunker in New England. 2020 was not the best of times, but it was not the worst… 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