The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) was terminated in early April 2025. For more than 20 years, this committee has governed the Recommended Uniform Screening Panel (RUSP), which helps to ensure that there is access to newborn screening, diagnosis, and intervention for serious and/or life-threatening medical conditions. Some conditions on the RUSP list can cause seizures, and many other rare disorders that cause seizures and epilepsy in infants and children could be added. 

The impact the immediate dissolution of the ACHDNC will have on infants, children, and their caregivers in the rare epilepsy community is extremely concerning. Epilepsy is a spectrum disorder encompassing many diagnoses, including a growing number of rare epilepsies that are increasingly being identified through their genetic links. The dissolution of this committee leaves many families in limbo and completely ends any possibility of enhancement, expansion, and improvement of the U.S.’s ability to reduce preventable suffering and deaths of infants.  

Tell Congress to protect newborn screening and reinstate the ACHDNC!

We strongly encourage you to share your own personal experience as a member of the epilepsy community. More personalized comments will have significantly more impact.  

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