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February 19, 2021

TOPIC: Featured News, Patients & Members, Advocacy, Head of the Herd

Head of the Herd: Chandra Clark, VHL Alliance

Posted at February 2, 2021 08:40 am by Valaree DonFrancesco

At the Head of the Herd is… Chandra Clark, Executive Director, VHL Alliance. Today she shares her passion for incorporating diversity, equity, and inclusion within the rare disease space.

Prior to joining VHL Alliance, how did you get exposure to diversity, equity and inclusion (DEI)? How do those experiences carry over to your work with the von Hippel-Lindau syndrome (VHL)… Read More

February 18, 2021

TOPIC: Featured News, Advocacy

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

Posted at February 2, 2021 03:05 pm 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

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

February 9, 2021

TOPIC: Featured News, Patients & Members, Advocacy

NORD Launches Rare Disease Educational Support Program

Posted at February 2, 2021 10:48 am 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

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 at January 1, 2021 12:13 pm 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