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
Written by Valaree DonFrancesco on January 26, 2021
Washington, DC, January 26, 2021—In an effort to provide clear, useful, authoritative information to rare disease patients and caregivers on the COVID-19 vaccines, on January 15 the National Organization for Rare Disorders (NORD®), along with The ALS Association, Cystic… Read More
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
Written by Valaree DonFrancesco on March 5, 2020
As information on the coronavirus, which causes COVID-19, dominates the news, we want to share with you guidance from the Centers for Disease Control and Prevention (CDC). The National Organization for Rare Disorders (NORD) continues to monitor the situation with the rare community in mind. The severity of illness or… Read More
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
