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Your QuestionMy grandson was recently diagnosed with hemimegalencephaly. He's currently on-track developmentally. Are there degrees of severity with this condition? Where can we find the best information or an expert we could talk to?
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Questions on this page
Genetics clinics are a source of information for individuals and families regarding genetic conditions, treatment, inheritance, and genetic risks to other family members. More information about genetic consultations is available from Genetics Home Reference. To find a genetics clinic, we recommend that you contact your primary healthcare provider for a referral.
The following online resources can help you find a genetics professional in your community:
- GeneTests has a searchable directory of US and international genetics and prenatal diagnosis clinics.
- The National Society of Genetic Counselors provides a searchable directory of US and international genetic counseling services.
- The American College of Medical Genetics has a searchable database of US genetics clinics.
- The University of Kansas Medical Center provides a list of US and international genetic centers, clinics, and departments.
- The American Society of Human Genetics maintains a database of its members, which includes individuals who live outside of the United States. Visit the link to obtain a list of the geneticists in your country, some of whom may be researchers that do not provide medical care.
- Flores-Sarnat L. Hemimegalencephaly: part 1. Genetic, clinical, and imaging aspects. Journal of child neurology. 2002; 17:373-384. http://www.ncbi.nlm.nih.gov/pubmed/12150586. Accessed 11/27/2012.
- Fusco L, Ferracuti S, Fariello G, Manfredi M, Vigevano F. Hemimegalencephaly and normal intellectual development. Journal of neurology, neurosurgery, and psychiatry. 1992; 55:720-722. http://www.ncbi.nlm.nih.gov/pubmed/1326602. Accessed 11/27/2012.