Frequently Requested Medical Contacts (listed alphabetically)

Please click here to go to the Doctor & Researcher contact page.

Brain Bank - Information on donating your MLD family member's brain for further MLD research.


Clinical Descriptions of MLD

• NIH/GeneReviews - Metachromatic Leukodystrophy, ARSA Deficiency A comprehensive, fairly easy to read , and comprehensive overview written by Dr. Arvhan Fluharty of UCLA in 2006.


• eMedicine An excellent, easy to read MLD overview covering the clinical, diagnosis, treatment, progression, medication (none) & follow-up care for MLD family members. Written by Doctors Ikeda & Moore from UCLA and Dr. Steiner of Oregon Health & Science University. September 2008


• NCBI - National Center for Biotechnology Information from the National Institute of Health, National Library of Medicine. A comprehensive source of information - mostly very technical.
  


• Comprehensive & Detailed MLD Summary An Italian source ... ~1995
  
  

Other non-MLD Clinical Descriptions of Interest

• University of Vermont - DISEASES OF THE MYELIN SHEATH
  
  
  

Medical Centers

• Fairview-University Blood and Marrow Transplant (BMT) Program - University of Minnesota
  
  
• Bone Marrow and Stem Cell Transplant Program - Duke University, North Carolina
  
  
• Hematopoietic Stem Cell Transplant Therapy - Children's Mercy Hospital, Kansas City, MO
  
  
• Google Search - no experience or endorsements implied.
  
  

Medical Definitions & Additional Information

• Online Mendelian Inheritance in Man - very comprehensive and technical from the National Center for Biotechnology Information
  
  
• MEDLINEplus - National Inst Health, National Library of Medicine
  
  
• National Organization for Rare Disorders (NORD)
  
  
• Human Gene Mutation database - very technical
  
  
• Pediatrics Journal - search for Metachromatic Leukodystrophy
  
  
• National Institute of Health - Office of Rare Disease clinical trial listing - search for Metachromatic Leukodystrophy
  
  
• Centerwatch clinical research overview and and clinical trials database - search for Metachromatic Leukodystrophy
  
  
• National Institute of Neurological Disorders and Stroke
  
  
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MLD Diagnostic Labs

• David Wenger's lab at Thomas Jefferson University - The recommended lab for all US MLD tests.
  
  MLD Diagnostic Labs - A list of US and International labs testing for MLD including Australia, Germany, India, Switzerland, Canada, Israel, and Austria labs.
  
  
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• Bethany's Hope - Canadian Foundation supporting gene therapy based MLD research - sponsoring a lab in London, Ontario, Canada
  
  
• The Myelin Project - focused on accelerating the research on repair of the myelin damaged by the genetic diseases such as the leukodystrophies, and by acquired diseases such as multiple sclerosis.

  
  San Raffaele-Telethon Institute of Gene Therapy of Genetic Diseases (Italy) - gene therapy research

  
  Myelin Repair Foundation (California) - a unique approch to seeking myelin repair

  
  

• Bone Marrow & Stem Cell Transplantation