When children with a rare disease are diagnosed at birth, they have the greatest opportunity to receive timely, approved treatments or participate in clinical trials that can provide them better quality of life and less pain and suffering. Early diagnosis and intervention affords the children the best chance at living a healthy life and are key objectives of Cure Sanfilippo Foundation’s efforts. Which is why the Foundation continues to back state legislation that requires the states to screen newborn babies for any disorder on the federal Recommended Uniform Screening Panel (or RUSP).
The Mississippi State Assembly introduced HB 927/SB 2900 last week. This legislation expands newborn screening in Mississippi to ensure that all federal RUSP conditions are added to the screening panel within three years.
The Maryland State Assembly introduced HB 109/SB 242 earlier this month to expand the state’s newborn screening by ensuring that all federal RUSP conditions are added to Maryland’s screening panel within two years.
Cure Sanfilippo Foundation has joined several other patient advocacy organizations in signing on to a letter of support the EveryLife Foundation is submitting to legislative leaders, thanking them for their support of this important legislation.
Currently, six states have adopted RUSP alignment legislation, including California in 2016, Florida in 2017, and Georgia, Ohio, Arizona, and North Carolina in 2021.
Also a part of the Foundation’s efforts to broaden newborn screening, it is helping fund the largest-ever U.S. newborn screening study, ScreenPlus. Babies at multiple high-birth-rate, ethnically-diverse hospitals in New York are now being screened for 14 devastating childhood diseases, including Sanfilippo, through the program. This is in addition to the state’s existing newborn screening program.