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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 at February 2, 2021 03:35 pm 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

January 26, 2021

TOPIC: Press Releases, Featured News, Patients & Members, Research, COVID-19

NORD and Partners Host FDA, CDC Leaders in Webinar Addressing Rare Disease Community on COVID-19 Vaccines

Posted at January 1, 2021 11:00 am by Valaree DonFrancesco

Washington, DC, January 262021In an effort to provide clear, usefulauthoritative information to rare disease patients and caregivers on the COVID-19 vaccineson January 15 the National Organization for Rare Disorders (NORD®), along with The ALS Association, Cystic Fibrosis Foundation and Muscular Dystrophy Association, hosted a special… Read More

October 15, 2020

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

NORD Issues Report on Ensuring Access to Telehealth for Rare Diseases

Posted at October 10, 2020 06:38 pm by Jennifer Huron

For those in the rare community, one of the few positives that have come from the global COVID-19 pandemic has been the wider availability of telehealth services. Through surveys, virtual discussion groups and direct advocacy efforts, NORD has continued to track rare patients’ and caregivers’ use of and experience with telehealth. The findings from NORD’s work are gathered in… Read More

October 5, 2020

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

NORD and FDA Co-Host Public Listening Session, Focusing on COVID-19 and Rare Diseases

Posted at October 10, 2020 09:32 am by Valaree DonFrancesco

The COVID-19 pandemic has caused great fears around drug shortages, the demand for personal protective equipment (PPE) and the status of clinical trial research for rare diseases. On September 16, NORD heard from our rare disease community and brought their questions directly… Read More

July 23, 2020

TOPIC: Press Releases, Featured News, COVID-19

NORD Awards COVID-19 Rapid Response Seed Grants to Rare Disease Patient Organizations Impacted by the Pandemic

Posted at July 7, 2020 10:02 am by Valaree DonFrancesco

Washington, DC, July 23, 2020—In response to the unprecedented challenges rare disease nonprofit organizations are currently facing, the National Organization for Rare Disorders (NORD®) today announced nineteen seed grant recipients of its COVID-19 Rapid Response Leadership Series program. The awards will assist patient advocacy groups to access capacity-buildingRead More