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Name Leigh Syndrome
Related to/Also known as
  • Leigh's Disease
  • Leigh's Syndrome
  • Necrotizing encephalopathy
  • Subacute Necrotizing Encephalomyelopathy (SNEM)
  • Mitochondrial disease
Symptoms of Leigh Syndrome

Leigh Syndrome is a rare, inherited, early-onset degenerative disorder with many different symptoms.

This is a disease of the mitochondria, which provide energy for nerve cells in the brain and muscles.

Types X-linked Leigh Disease
Useful national contacts Metabolic Support UK (formerly known as Climb)
Link opens in new window www.metabolicsupportuk.org
Tel. 0845 241 2173
The Leigh Network (Facebook)
Link opens in new window https://tinyurl.com/yaeud4e
The Rare Mitochondrial Disease Service for Adults and Children (NHS)
Link opens in new window www.mitochondrialncg.nhs.uk
Children & young people

INHERITED METABOLIC DISEASE AND CORONAVIRUS (COVID-19) Advice for patients / parents / guardians (Metabolic Support UK)
Link opens in new window INHERITED METABOLIC DISEASE AND CORONAVIRUS (COVID-19)

NextGen (Metabolic Support (UK)
Support for young people (aged 12-18) living with an Inherited Metabolic Disorder
Link opens in new window www.metabolicsupportuk.org/young-people

Alex – Leigh’s Disease (Metabolic Support (UK)
Link opens in new window www.metabolicsupportuk.org/alex-leighs-disease

Leigh syndrome ('Contact' charity for families with disabled children)
Link opens in new window https://tinyurl.com/yx48ntmn

News and events  
Online resources

Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19 (GOV.UK)
Link opens in new window www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

Coronavirus Advice (Metabolic Support UK
Link opens in new window www.metabolicsupportuk.org/coronavirus-advice

Leigh Syndrome (Metabolic Support UK)
Link opens in new window https://tinyurl.com/y2w6h24z

Leigh Syndrome (U.S. National Organization for Rare Disorders)
Link opens in new window https://rarediseases.org/rare-diseases/leigh-syndrome

Leigh's Disease Information Page (U.S. National Institute for Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/ybh4rabh

Our resources The library at The Brain Charity has a range of resources on Leigh's Disease and on a wide range of disability-related issues.