When My Newborn Screening Test Wasn’t OK: a Rare Disease Day Story

Every baby gets a newborn screening test, not every mother gets the news that the baby is OK. For me, the news was that baby needs a second test. And a third, and so on for 26 years. For Rare Disease Day, my daughter Lillian Isabella and I talk about how this actually happened. In … Continue reading When My Newborn Screening Test Wasn’t OK: a Rare Disease Day Story