Metachromatic Leukodystrophy: New Disorder Resources and Tools

Date: August 17, 2026

The Metachromatic Leukodystrophy (MLD) Toolkit is now available. Developed by the NewSTEPs New Disorder Subcommittee, this toolkit is designed to support state and territorial newborn screening (NBS) programs as they prepare for and implement screening for MLD. The resource provides tools and information to assist programs in communicating with and educating key partners throughout the implementation process. 

The toolkit includes:

  • An overview of MLD
  • Information on the NBS process
  • Screening preparation and implementation considerations
  • Educational resources and communication tools

This toolkit is intended for use by state and territorial NBS programs and can be shared with a variety of partners, including specialists, advocacy organizations, legislators, and government agencies involved in newborn screening efforts.

We encourage you to explore and utilize these resources as part of your NBS program's planning and implementation activities.

Metachromatic Leukodystrophy Toolkit

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