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.
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.
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.
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