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
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 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 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
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
