Last Updated: Jun 24, 2025
The Department of Health's (Department) Division of Newborn Screening and Genetics, with the support of the Newborn Screening and Follow-up Technical Advisory Board (Board) is adding Metachromatic Leukodystrophy (MLD) screening, effective January 1, 2026, to the supplemental conditions mandated for screening and follow-up by Commonwealth submitters and follow-up by the Commonwealth newborn screening program.
MLD is a lysosomal storage disorder. These disorders impact the development of myelin, the covering that facilitates nerve function. MLD is characterized by progressive intellectual disability, seizures, progressive loss of mobility, impaired speech, difficulty swallowing and loss of muscle function.
The addition of MLD to the Commonwealth's supplemental mandated screening panel will increase the cost of the supplemental mandated panel by an estimated $8.95 per newborn and will be invoiced to submitters by the laboratory.
For more information, please review the June 21, 2025 edition of the Pennsylvania Bulletin.
Newborn Screening and Follow-Up Technical Advisory Board Meeting
The Newborn Screening and Follow-Up Technical Advisory Board (Board) will hold a public meeting on Thursday, July 24, 2025, from 10 a.m. until 12 p.m. The meeting will be conducted in person only. The location for attendance is 90 Hope Drive, Academic Support Building, 1st Floor, Hershey, PA 17033. Individuals must RSVP no later than Friday, July 18, 2025, if they plan to attend in person.
The agenda will include discussions about the Board member terms; updates from the Bureau of Family Health; and updates from the Lysosomal Storage Disorders/X-ALD, Cystic Fibrosis, Hemoglobinopathy and the Critical Congenital Heart Defects subcommittees. Program staff will provide data for each subcommittee update as needed.
For more information, please review the June 21, 2025 edition of the Pennsylvania Bulletin.
Brain Injury Advisory Board Meeting
The Brain Injury Advisory Board (Board) will hold a public meeting on Friday, August 1, 2025, from 10 a.m. to 3 p.m. The meeting will be held in person at the Pennsylvania Training and Technical Assistance Network, 6340 Flank Drive, Harrisburg, PA 17112 in the Cumberland conference room.
Meeting materials will be sent out before the meeting and will also be available on the Board's website at bit.ly/3PX0VRQ and at the meeting location. Contact Nicole Johnson at nfjohnson@pa.gov with any questions.
The Department of Health's (Department) Head Injury Program (HIP) strives to ensure that eligible individuals who have a traumatic brain injury receive high quality rehabilitative services aimed at reducing functional limitations and improving quality of life. The Board assists the Department in understanding and meeting the needs of persons living with acquired brain injuries, both traumatic and nontraumatic, and their families.
For more information, please review the June 21, 2025 edition Pennsylvania Bulletin.
Health Research Advisory Committee Meeting
The Department of Health's (Department) Health Research Advisory Committee (Committee) will hold a public meeting on Wednesday, July 30, 2025, from 10 a.m. to 11 a.m. The meeting will be held at the Nesquehoning Recreational Center, 335 West Railroad Street, Nesquehoning, PA 18240.
The meeting will also have a virtual option by means of Microsoft Teams at (267) 332-8737 with conference ID: 321 907 685#. The meeting ID is 271 108 635 349 5. The passcode is KE3cU96w.
The purpose of this meeting is to satisfy the legislative requirement for a Committee meeting to discuss the research priority to be released during State Fiscal Year 2025.
Check the Department's Health Research Office CURE Health Research Advisory Committee website at https://bit.ly/3FoVZmn for any changes to this public meeting.
For more information, please review the June 21, 2025 edition of the Pennsylvania Bulletin.