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February 17, 2021

TOPIC: Featured News, Patients & Members, Advocacy, COVID-19

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

Posted by Heidi Ross

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 disease patients whose conditions may put them at higher… Read More

February 10, 2021

TOPIC: Featured News, Rare Disease Day, #NORDintheNews

NORD Featured in BioNews Service Article on Rare Disease Day Happenings

Posted by Valaree DonFrancesco

In “Pandemic Won’t Stop Rare Disease Day on Feb. 28,” an article by BioNews Service’s Mary Chapman that ran on 2.10 and is being picked up by 25+ of BioNews’ rare disease community-specific newsletters, NORD and our Rare Disease Day offerings are featured prominently, including:

  • Quotes from Peter L. Saltonstall
  • Information on the Show Your Stripes campaign and the… Read More

February 9, 2021

TOPIC: Featured News, Patients & Members, Advocacy

NORD Launches Rare Disease Educational Support Program

Posted by Rebecca Aune

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 to live their best lives while managing their rare condition. One of the pillars of NORD’s mission is educating patients and caregivers to advocate for themselves so they can… Read More

February 2, 2021

TOPIC: Featured News, Research, #NORDintheNews

NORD Featured in February 2021 Issue of PharmaVOICE

Posted by Valaree DonFrancesco

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 Diagnosis, Care and Treatment in the US: A 30-Year… Read More

January 28, 2021

TOPIC: Press Releases, Featured News, Patients & Members, Advocacy, Rare Disease Day

How Will You Show Your Stripes in 30 Days? Join NORD in Spreading Awareness for Rare Disease Day®, February 28

Posted by Valaree DonFrancesco

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 largely unknown to the general public. RRead More