UCL Queen Square Institute of Neurology


Aicardi Syndrome

Definition of Aicardi Syndrome, taken from NINDS factsheet (see below): Aicardi syndrome is a rare disorder characterized by the partial or complete agenesis (absence) of the corpus callosum (the structure that links the 2 hemispheres of the brain), infantile spasms (a form of childhood seizure), mental retardation, and an ocular (eye) abnormality called lacunae (lesions) of the retina of the eye. Aicardi syndrome may be associated with other brain defects such as microcephaly (small brain) or porencephalic cysts (cerebrospinal fluid-filled cavities or gaps in the brain). Onset of Aicardi syndrome generally begins between the ages of 3 and 5 months. The disorder affects only females.

Aicardi Syndrome: factsheet from NINDS, the National Institute of Neurological Disorders and Stroke (US site)

Aicardi Syndrome: information from NORD, the National Organization for Rare Disorders (US site)

PubMed Medline search on Aicardi Syndrome

Support Groups

Corpal is a not-for-profit support group and charity run by parents, families and carers of children and adults who have Agenesis of the Corpus Callosum (ACC) or Aicardi Syndrome.

Aicardi Syndrome Foundation (US site)
This US based website provides a chat room and information network on Aicardi Syndrome for families and professionals.

Brain and Spine Foundation
Information on living with a neurological condition and on diagnosis. There are publications and resources. The useful glossary of neurological conditions (under 'Information and support') includes links to some other organisations as well as to Brain and Spine Foundation information.

Healthtalk: nerves and brain
Personal experiences of people living with various neurological conditions.

Neurological Alliance
Collective voice for 80 organisations, including stroke and brain injury. Organisations are listed at https://www.neural.org.uk/our-members/, a good place to start if looking for information on those conditions. Site also includes information about living with a neurological condition, a glossary, and information about onset and diagnosis as well as a small set of real life stories.

NHS Inform: brain, nerves and spinal cord 
NHS inform is Scotland's national health information service, with the aim of providing the people in Scotland with accurate and relevant information to help them make informed decisions about their own health and the health of the people they care for.