The expanded newborn screen tests will include screening for Pompe disease, Mucopolysaccharidosis type 1 (MDS 1), and X-linked AdrenolevKodystropy (X-ALD). NC Representative Gregory Murphy, MD will make a press announcement Wed. May 30th @ 9:30 in the General Assembly Press Room. All patient advocates are invited to attend and state with him at the microphone.
Announcement from NC Representative, Gregory Murphy, MD:
I am proud to tell you that Representatives Dobson, Dollar, Lewis, Lambeth, Senator Hise and I have been successful in championing the coalition’s newborn screening initiative. The provision in the budget bill will expand newborn screening tests to include Pompe disease, Mucopolysaccharidosis type 1 (MDS 1), and X-linked AdrenolevKodystropy (X-ALD). Additionally, our newborn screening tests will continue to expand as the United States Department of Health and Human Services adds disorders to the Recommended Uniform Screening Panel (RUSP).
We are hosting a press conference on Wednesday, May 30th at 9:30 in the General Assembly Press Room. We certainly hope that you can attend and would love to have patient advocates stand with us at the microphone.
Sincerely,
Gregory Murphy, MD
NC House of Representatives
9th District, Pitt County, NC
North Carolina Rare Disease Network 