Hemimegalencephaly is a rare malformation involving one side of the brain. It may occur alone or in association with other
Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
New NCATS Rare Diseases Research Video
December 27, 2017
Rare Disease Day at NIH on March 1, 2018
December 19, 2017
Cerebellar Development: Bench to Bedside 2006 International Conference
Thursday, November 9, 2006 -
Sunday, November 12, 2006
Location: Washington, DC
Description: This meeting addressed human disorders and animal models and focused mainly on mouse and zebrafish. Session topics included delineation of syndromes, gene identification, molecular analysis, prenatal diagnosis, cerebellar patterning, cell specification, neuronal migration, and genetic pathways.
Contact: Dr. Katrina Gwinn-Hardy(301) 496-5745
Co-funding Institute(s): National Institute of Neurological Disorders and Stroke
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My granddaughter has hemimegalencephaly and is suffering with seizures that thus far are not being controlled with any medications. We have been told the next step is to have brain surgery. Can you provide me with information about this? See answer
My 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? See answer