Following their legislative success in California with the passage of Senate Bill 1095) last year, The EveryLife Foundation is seeking to expand their efforts to advance early diagnosis and treatment through robust newborn screening programs across the United States. They are currently working to introduce similar legislation in Florida, which has yet to screen for MPS I, Pompe, or X-ALD.
The foundation is preparing a toolkit to help patient organizations expand newborn screening panels in their states. They will also host a webinar on How to Add Your Disease to the RUSP on October 4th, which will cover the basics of how you can get the Secretary of Health and Human Services to recommend new diseases for screening.
To get involved, please consider joining the Community Congress Newborn Screening Working Group, which is free for patient organizations.