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.
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
LCN Strategic Funding Partners
For the LCN to reach its fullest potential, we rely on strategic partnerships from the Leukodystrophy community, affected families and other individuals and organizations. We are thankful for the key partners listed below who share our passion to give affected individuals the medical care they deserve.
The Believing for Bryleigh Foundation provides relief, support, and assistance to families affected by Metachromatic Leukodystrophy (MLD) and other Leukodystrophies and disabilities by helping to provide education, awareness and family support programs, funding research and providing financial support directly to families themselves in order to successfully adapt to this life changing event and other charitable functions incident to these primary purposes.
The Jackson Project is dedicated to improving the quality of life for families affected by Leukodystrophy by financially supporting families in obtaining equipment or services they need to best care for those affected, raising awareness about Krabbe, other Leukodystrophies, and the critical role of Newborn Screening, and partnering with the Leukodystrophy Care Network.
BethanysHope Foundation conducts research into the cause, control and cure of Metachromatic Leukodystrophy (MLD), undertakes public education and publication about MLD, and gives “Hope” to children and their families who suffer with the devastation of Leukodystophy.