Written by Valaree DonFrancesco on January 27, 2021
Washington, DC, January 27, 2021—Today, the National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN™) published the 6th Edition of the State Report Card, the annual report rating each state and Washington, DC on the most important Read More
Written by Valaree DonFrancesco on December 17, 2020
In a 12.16.2020 article from STAT on how shortages of protective gear pose a continued threat to some rare disease patients, NORD’s COVID-19 Community Survey Report is highlighted and NE Rare Action Network’s Aimee Guarnieri and NY Rare Action Network’s Mary Wooten are interviewed. Also interviewed in the piece… Read More
Written by Corinne Alberts on October 1, 2020
Today, Nebraska’s Medicaid expansion begins to take effect. This milestone—two years in the making—means that thousands more low-income people, including many who have a rare disease, now have access to health care coverage.
Nebraska is the latest in the long line of successful ballot initiatives to expand Medicaid. Since the… Read More
Written by Valaree DonFrancesco on September 29, 2020
SCREENING NEWBORNS FOR RARE DISEASES: THE IMPORTANCE OF CONFIRMATORY TESTING AND COLLABORATION
By José Abdenur, MD and Rebekah Bressi, CGC
”Newborn screening is one of the most successful public health initiatives that allows physicians to prevent the disability or death of thousands of children every year. Providing a timely diagnosis… 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