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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

A Newborn Screening Reflection: Sarah’s Story

Written by Valaree DonFrancesco on September 15, 2020

September is Newborn Screening Awareness Month, and I’d like to share our family’s experience with it, and why we think every parent should know more about this incredible test, that looks for dozens of genetic disorders in babies that are not so easily apparent at birth.

My husband Chris and I… Read More

September is Newborn Screening Awareness Month

Written by Valaree DonFrancesco on September 1, 2020

A Personal Reflection from Stephanie Cozine, Delaware Rare Action Network Ambassador

Did you know that your baby is screened for different diseases depending on which state you live in?  That it’s possible your state doesn’t screen for a disease that it is recommended to? Do you know what your newborn is… Read More