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
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
Washington, DC, January 30, 2020—According to the 5th Edition of the “State of the States Report,” released today by the National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN™), while many US states took powerful steps forward in 2019, there is major work yet to be done… Read More
2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary. For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate. Our policy, research and other efforts have played a significant… Read More
2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary. For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate. Our policy, research and other efforts have played a significant… Read More
