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Neuroacanthocytosis

(also known as chorea-acanthocytosis, Levine-Critchley syndrome)

Definition: Neuroacanthocytosis is a very rare disorder inherited as an autosomal recessive or possibly an autosomal dominant genetic trait. Onset of Neuroacanthocytosis usually occurs during adolescence or early adulthood. Major symptoms of this disorder are wasting of muscles with uncontrolled rapid muscular movements (amyotropic chorea) and abnormal red blood cells (acanthocytosis). - from: NORD. The National Organization for Rare Disorders.

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

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

Neuroacanthocytosis from eMedicine World Medical Library

PubMed Medline search on neuroacanthocytosis

Support Groups

Institute for Neuroacanthocytosis
The website is provided by the Advocacy for Neuroacanthocytosis Patients, an international group of patients, their families and friends as well as clinicians and researchers seeking to find relief from these illnesses. The Advocacy publishes NANews, an e-newsletter, several times each year and encourages communication between those affected or concerned by this disease. Researchers will also find information about the Advocacy's grants for research projects.

The Parkinson's Disease, Huntington's Disease and Contact pages may also provide useful information.

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.

 

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