News - Page 5 of 143 - NORD (National Organization for Rare Disorders)

February 18, 2021

NORD Supports California Attorney General Xavier Becerra’s Nomination as Next Secretary of Department of Health and Human Services (HHS)

Posted by Heidi Ross

The National Organization for Rare Disorders (NORD®) is pleased to support California Attorney General Xavier Becerra’s nomination as the next Secretary of the Department of Health and Human Services (HHS). Rare disease patients rely on close collaboration between HHS and numerous agencies under its purview, including the Food and Drug Administration (FDA), Centers for Disease Control and Prevention… Read More

Tags: HHS, rare disease patients, Patient-Focused Drug Development, Department of Health and Human Services, newborn screening, HELP Committee, Senate Finance Committee, California Attorney General Xavier Becerra, Secretary of the Department of Health and Human Services

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

Tags: CDC, covid-19, Centers for Disease Control and Prevention, ALS Association, Cystic Fibrosis Foundation, Muscular Dystrophy Association, Director Walensky, Advisory Committee on Immunization Practices, ACIP, vaccination prioritization

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

Tags: Rare Disease Day, eurordis, Peter L. Saltonstall, National Institutes of Health, Rare Action Network, Rare disease advisory councils, The Balancing Act, Lifetime Television, Behind the Mystery

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

Tags: NORD, Patient Assistance, Horizon Therapeutics, Rare Disease Educational Support Program

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

Tags: covid-19, NORD COVID-19 Community Survey Report, PharmaVOICE, Undiagnosed Patients Registry

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February 18, 2021

NORD Supports California Attorney General Xavier Becerra’s Nomination as Next Secretary of Department of Health and Human Services (HHS)

Posted by Heidi Ross

February 17, 2021

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

February 10, 2021

NORD Featured in BioNews Service Article on Rare Disease Day Happenings

Posted by Valaree DonFrancesco

February 9, 2021

NORD Launches Rare Disease Educational Support Program

Posted by Rebecca Aune

February 2, 2021

NORD Featured in February 2021 Issue of PharmaVOICE

Posted by Valaree DonFrancesco

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Alone we are rare. Together we are strong.®