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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

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

Written by Laura Mullen 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

TAKE ACTION: Join NORD & Over 100 Patient Organizations in Supporting the RARE Act

Written by Lisa Sencen on April 18, 2018
An exciting new piece of legislation known as the RARE Act (Rare disease Advancement, Research, and Education Act) of 2018 (H.R.5115) was recently introduced by Congressmen Carson and Costello. This legislation would greatly help the rare disease community by:
  • Increasing rare disease research funding at the National Institutes of Health (NIH) by authorizing an additional… Read More