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UR Medicine / Neurology / UR Leukodystrophy Care Center
 

UR Leukodystrophy Care Center

Mission: 

The UR Leukodystrophy Care Center (UR LCC) provides excellent clinical care for children with the full spectrum of inherited white matter disorders (leukodystrophies). Our goal is to make a positive impact on the quality of life for children and adolescents struggling with these disorders by providing a friendly and supportive clinical structure that families find easily accessible. We will seek to focus on all aspects that ultimately influence the affected individual’s lifelong quality of life. This includes the process of diagnosis, mechanisms to monitor disease progression, anticipation and management of secondary symptoms, addressing cognitive and emotional well-being, and participation in research and professional networks.

Clinical Services:

  • Our center is the primary referral site for central, western and the southern tier of NYS, but would accept referrals, and provide full evaluation and diagnostic services for children and young adults (up to age 25 years) with suspected leukodystrophy.
  • Our center is an integral part of the division of Child Neurology at the University of Rochester so we have full access to the many pediatric specific specialists and resources, including all those at the new Golisano Childrens Hospital in Rochester.
  • Clinical care will be provided from initial concern, throughout childhood and until transition to adult care is completed. The disorders the UR LCC would follow include but are not limited to:
    • Alexander Disease                                      
    • Canavan Disease 
    • Metachromatic leukodystrophy
    • Krabbe Disease
    • X-linked Adrenoleukodystrophy (X-ALD)     
    • Pelizaeus-Merzbacher Disease
    • Vanishing White Matter Disease
    • Megalencephalic leukoencephalopathy with subcortical cysts (MLC)
    • Undiagnosed leukodystrophies                                        
  • The UR LCC also evaluates young infants who screen positive on the NYS newborn screen for Krabbe Disease or X-ALD. We will provide an urgent appointment for work-up and  family counseling and offer access to any relevant monitoring and/or treatment options.

Golisano Children’s Hospital is an LCN Certified Center, meeting or exceeding Criteria LCN Center Certification, link – http://huntershope.org/family-care/leukodystrophy-care-network/lcn-care-centers/

 

The Leukodystrophy Care Network (LCN) is a community of affected families, organizations and medical providers committed to revolutionizing the health and quality of life of individuals affected by Leukodystrophies with proactive, innovative, and comprehensive medical care standards and specialized centers. To learn more, please visit the LCN website – https://leukodystrophycarenetwork.org