UCL Queen Square Institute of Neurology


Neurodegeneration with Brain Iron Accumulation (NBIA)

(also known as Hallervorden Spatz disease)

Medline NLM definition: Progressive hereditary disorder with marked reduction in the number of myelin sheaths of the globus pallidus and substantia nigra with accumulation of iron pigment. Manifestations include dysarthria, progressive mental deterioration, and corticospinal and extrapyramidal motor signs.

PubMed Medline search on Hallervorden-Spatz disease

NINDS factsheet

Support Groups

Metabolic Support UK
Metabolic Support UK (formerly known as Climb - Children Living with Inherited Metabolic Diseases) are the leading patient organisation for Inherited Metabolic Disorders supporting thousands of patients worldwide.

NBIA Disorders Association - US site
Created to provide families, physicians, and support providers with information about an inherited disease called Neurodegeneration with Brain Iron Accumulation (NBIA).

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.