International Hydranencephaly Support Group

The International Hydranencephaly Support Group (IHSG) is a voluntary organization whose purpose is to provide information and support to families of children who have hydranencephaly. IHSG also strives to educate medical professionals as to the potential of children with this condition. Hydranencephaly is a central nervous system disorder characterized by an enlarged head and neurological deficits. The exact cause of hydranencephaly is not known. This extremely rare form of hydrocephalus involves the absence of portions of the brain. Results of neurologic examination in newborns may be normal or abnormal. The head usually appears enlarged at birth. Vision impairment, lack of growth and intellectual deficits are symptomatic of this disorder.