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News and Education

National Newborn Screening Meeting on New Disorders (Pompe, MPS I, X-ALD)

June 22-23, 2017

Pompe was added to the Recommended Uniform Screening Panel (RUSP) in March 2015, and X-Linked Adrenoleukodystrophy (X-ALD) and Mucopolysaccharidosis type I (MPS I) were added in February 2016. State newborn screening programs pursuing universal implementation of these three new disorders encounter laboratory, staffing, clinical follow-up, personnel, equipment, education and legislative challenges.

  • Location: Bethesda, MD
  • Dates: June 22-23,2017
  • Agenda: Found linked here.
  • Workbook: Found linked here.
  • Meeting Summary: Found linked here.
  • Purpose: To convene newborn screening personnel (both APHL subawardees and non-subawardees) who support the implementation of new disorders added to the RUSP, as well as pertinent partners and stakeholders who have experience with implementing new disorders.
  • Meeting Objectives:
    1. Discuss current status of newborn screening for Pompe, MPS-I and X-ALD.
    2. Discuss policy, laboratory, follow-up and education needs, barriers and solutions for newborn screening.
    3. Provide state experiences in implementing newborn screening.

If you have any questions please contact Kshea Hale at kshea.hale@aphl.org or 240-485-3842.