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Archives for: February 22nd, 2022

A Rare Report Card: NORD Grades All 50 States on Rare Disease Policy Issues

Written by Rohan Narayanan on February 22, 2022

NORD’s State Report Card Provides Critical Analysis Across Nine Policy Areas, Including Telehealth, Drug Costs, Medicaid Eligibility, and More

February 22, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) published the latest edition of its annual State Report Card, which rates all 50 states and Washington, DC… Read More

Newborn Screening: History, Future and Awareness Month

Written by Valaree DonFrancesco on September 1, 2021

Every September, we celebrate and raise awareness for newborn screening (NBS) in the United States and the impact it has had on millions of families. Each year, approximately four million babies are screened for serious disorders that are present at birth. Of those four million, screening identifies over 12,000 infants annually with a… Read More

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

Written by Heidi Ross on February 18, 2021

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… Read More

Newborn Screening: The HCP Perspective on the Importance of Confirmatory Testing and Collaboration

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