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September 1, 2021

TOPIC: Featured News, Newborn Screening

Newborn Screening: History, Future and Awareness Month

Posted at September 9, 2021 02:15 pm by Valaree DonFrancesco

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 condition that, if left undiagnosed and untreated, would cause… Read More

September 29, 2020

TOPIC: Featured News, Medical, Members, Newborn Screening

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

Posted at September 9, 2020 08:27 am by Valaree DonFrancesco


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 and treatment for families is among the most fulfilling… Read More

September 15, 2020

TOPIC: Featured News, Advocacy, Patient Stories, Newborn Screening

A Newborn Screening Reflection: Sarah’s Story

Posted at September 9, 2020 08:58 am by Valaree DonFrancesco

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 waited to have kids, enjoying the early years of… Read More

September 1, 2020

TOPIC: Newborn Screening, Featured News, Medical, Advocacy

September is Newborn Screening Awareness Month

Posted at September 9, 2020 08:25 am by Valaree DonFrancesco

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 screened for and how?

I knew that my baby was… Read More