A BIG thanks to the Genetic Disease Foundation for the generous grant for our newborn screening initiative. It is donors like you that help our communities most vulnerable, newborns, be screened for the rare genetic disorder Fabry Disease. This donation…
This September marks the 50th anniversary of newborn screening. Here at the Testing for Tots program, we believe that early detection, diagnosis and intervention can prevent death or disability and enable children to reach their full potential. Rare, and mostly…
Testing for Tots founders, Dr Brian and Mrs Tia Jones, are delighted to announce the formation of The Lysosomal Storage Disease Advocacy Coalition (LSDAC). This non-profit coalition of multiple patient advocacy organizations is dedicated to advancing public policy priorities to…
Our Newborn Screening Coordinator, Rachelen Varghese, presented to the Newborn Screening and Genetics committee in Nebraska on July 25th, 2023. The presentation covered in-depth facts about Fabry Disease, positive consequences of receiving timely therapy and the negative impact of delayed…
This will be a VIRTUAL MEETING on Monday, September 19, 2022 from 10:00 AM to about 3:15 PM Eastern Time This meeting will be broadcasted with a NOVEL NEWSCAST FORMAT, with patient testimonies and remote audience participation The meeting agenda consists of two…
