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Vision

The Leukodystrophy Care Network (LCN), established in 2015, is a network of medical providers, hospitals, Leukodystrophy organizations and affected families.

Our vision is for a world-renowned LCN to exist across the United States, Canada and eventually the world, to provide innovative therapies, treatment options, expert care and information to families affected by these diseases. The medical community will recognize the LCN and its Centers (LCC) as leaders in Leukodystrophies for patients and medical professionals. Centers will be self-sustaining, yet collaborative, networked together to ensure the highest quality groundbreaking care is available for all Leukodystrophy patients 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.

Core Values

The LCN and its Centers will Embrace and Promote…

  • The Highest Quality of Life
  • An attitude that Enhances and Celebrates Life
  • The affected individual’s Abilities and Potential
  • Patient Care as its Primary Focus
  • Long-Term and Comprehensive Care for the prevention of potential complications
  • A Multidisciplinary Team approach
  • Exceptional Standards of Care
  • A commitment to increasing value and Continuously Improving Quality.

Strategy

The key elements of the LCN’s strategy include the following:

  • Guided by Family Advocates to ensure Patient Centered Care
  • Learn from existing successful Multidisciplinary Care business models
  • Integrate Centers into established hospital systems
  • Utilize Existing Resources where possible
  • World Renowned Experts in Leukodystrophies and Multidisciplinary Care
  • Standards of Care
  • Multidisciplinary Team Model
  • Leukodystrophy Patient Registry
  • Ensure continuous excellence – LCN Advisory Committee
  • Involve Government Agencies, Funders and Other Stakeholders throughout the process
  • Promote education and growth through Public Awareness Campaigns

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 a network of Centers administered through a Coordinating Center. The LCN will utilize innovative tools such as medical videoconferencing, electronic medical record systems, and more.

The LCN Coordinating Center is:

  • Responsible for the administration and coordination of the LCN, working with the other Centers to ensure all affected individuals have access to the LCN and the most current information.
  • Providing assistance for medical experts in the LCN and helping the patient’s local medical teams in various regions throughout the United States and Canada care for affected individuals and their families.
  • Under the leadership of the LCN Steering Committee, the LCN will administer a peer-reviewed protocol to identify and qualify medical professionals and Centers throughout the United States and Canada.