The LCN is a network of Certified and affiliate Centers, NBS labs, industry partners, patient advocacy organizations, and affected families administered through a Coordinating Center. The Coordinating Center provides facilitation and coordination assistance for medical experts in the LCN and the patient’s local medical teams.
This includes the LCN Center Certification Requirements, LCN Center Agreements, LCN Clinical Practice Guidelines, the Krabbe NBS Council, Monthly Care Coordinator and Steering Committee meetings, connecting patients to LCN Centers, annual in-person meetings, and establishing meaningful partnerships with each stakeholder in the Leukodystrophy Community.