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Archives for: February 17th, 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

Written by Heidi Ross on February 17, 2021

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… Read More

Head of the Herd: Beverley Francis-Gibson, President and Chief Executive Officer, Sickle Cell Disease Association of America

Written by Valaree DonFrancesco on June 19, 2020

At the head of the herd is… Beverley Francis-Gibson, President and Chief Executive Officer, Sickle Cell Disease Association of America

Beverley advocates for those living with… sickle cell disease.

How Beverley got here…

I started working at SCDAA in 2018 because of my personal connection to sickle cell disease. I have a… Read More

Update on NORD’s Recent Advocacy Work on COVID-19 for the Rare Community

Written by Valaree DonFrancesco on April 20, 2020

In this time of crisis and uncertainty, NORD’s policy team has been working to pursue policies at the federal and state levels to address COVID-19 related concerns critical to the rare disease community. 

Protecting Access to Necessary Medical Treatment During the Pandemic

Social distancing is critical for slowing… Read More