Vision
Established in 2015, the Hunter’s Hope Foundation Leukodystrophy Care Network (LCN) is a network of medical providers, hospitals, newborn screening scientists, industry partners, Leukodystrophy organizations and affected families.
Our vision is to build a world-renowned, network that delivers innovative therapies, evidence-based treatment options, proactive and expert care, and lifelong support to adults and children living with Leukodystrophies.
Recognized by the medical community as leaders in Leukodystrophy care, the LCN and its centers work together as self-sustaining yet highly collaborative partners – ensuring that groundbreaking, high-quality care is available to every Leukodystrophy patient today and for generations to come.
Mission
To revolutionize the health and quality of life of individuals affected by Leukodystrophies with proactive, innovative, and comprehensive medical care standards and specialized centers throughout the U.S., Canada and eventually the world.
Leadership
The LCN is led by a Steering Committee of Family Advocates, supported by Leukodystrophy medical specialists and Hunter’s Hope staff. Learn more here.
Coordinating Center
The LCN is administered through a Coordinating Center, which facilitates collaboration among medical experts within the network and supports communication with each patient’s local medical team.
The Coordinating Center oversees key initiatives, including:
- LCN Center Certification Requirements and Center Agreements
- Development and implementation of LCN Clinical Practice Guidelines
- Leadership of the Krabbe Newborn Screening (NBS) Council
- Organization of monthly/quarterly LCN Director, Care Coordinator and Steering Committee meetings
- Connecting patients and families with LCN Centers
- Planning annual in-person meetings
- Building and maintaining meaningful partnerships across the leukodystrophy community
Through these efforts, the Coordinating Center ensures consistency, collaboration, and excellence across the entire network.