209 top medical experts on Megalencephalic leukoencephalopathy with subcortical cysts across 25 countries and 4 U.S. states, including 16 MDs (Physicians). This is based on an objective analysis of their Scientific Publications, Clinical Trials, Medicare, and NIH Grants.
- Megalencephalic leukoencephalopathy with subcortical cysts: A form of leukodystrophy that is characterized by infantile-onset macrocephaly, often with mild neurologic signs at presentation (such as mild motor delay), which worsen with time, leading to poor ambulation, falls, ataxia, spasticity, increasing seizures and cognitive decline. Brain magnetic resonance imaging reveals diffusely abnormal and mildly swollen white matter as well as subcortical cysts in the anterior temporal and frontoparietal regions.
- Clinical guidelines are the recommended starting point to understand initial steps and current protocols in any disease or procedure:
- Support Organizations
- Association Européenne contre les Leucodystrophies (ELA)
European Leukodystrophy Association
2, rue Mi-les-Vignes
BP 61024
54521 Laxou Cedex, France
Telephone: 333 83 30 93 34
Fax: 333 83 30 00 68
E-mail: ela@ela-asso.com
Website: http://www.ela-asso.com
- The Adrenoleukodystrophy Foundation
241 Camden Street
Slidell, LA 70461
Telephone: 985-718-4728
E-mail: info@aldfoundation.org
Website: http://www.aldfoundation.org
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Organizations Providing General Support
- Alex The Leukodystrophy Charity (Alex TLC)
45 Peckham High Street
London, SE15 5EB United Kingdom
Telephone: 020 7701 4388
E-mail: info@alextlc.org
Website: https://www.alextlc.org
- United Leukodystrophy Foundation (ULF)
224 North Second Street
Suite 2
DeKalb, IL 60115
Toll-free: 1-800-728-5483
Telephone: +1-815-748-3211
Fax: +1-815-748-0844
E-mail: office@ulf.org
Website: https://ulf.org/
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