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Archives for: February 18th, 2021

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

NORD Joins 400+ Groups to Prevent Discrimination During COVID-19 Triaging

Written by Valaree DonFrancesco on April 24, 2020

Between 25 and 30 million Americans have a rare disease, many of whom are disproportionately at risk of getting sick from COVID-19. According to the Centers for Disease Control and Prevention, in addition to older adults, people of any age who have serious underlying medical conditions… Read More

NORD Meets with HHS Secretary Azar to Discuss Needs of Rare Disease Patients

Written by Valaree DonFrancesco on June 15, 2018

Washington, D.C., June 15, 2018—On Wednesday, staff from the National Organization for Rare Disorders (NORD) met with Health and Human Services (HHS) Secretary Alex Azar to discuss the needs of rare disease patients. The meeting covered orphan drug innovation, growing patient involvement at the Food and Drug Administration… Read More