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September 3, 2021

TOPIC: Patients & Members, Patient Stories, COVID-19, Voices of Rare Cancer

Martin’s Fight Against Waldenstrom Macroglobulnemia

Posted at September 9, 2021 09:05 am by Rohan Narayanan

I have been a healthy person my whole life. I never drank alcohol or smoked, and I had a good diet. In 2004, I began to have some questionable numbers on blood work, but my primary doctor could never really tell what was going on. My knees shook when I was referred to a hematologist and oncologist in 2010. I was given a diagnosis of Monoclonal gammopathy of undetermined significance (MGUS). I was told that I had an indolent lymphoma that may or may not develop, and that I should “go… Read More

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