Fahr Beyond

Fahr Beyond

At a glance

Causes

  • Health and well being / research and care

Other details

Organisation type: 
Charity
Geographical remit: 
National - Britain

Objectives

Fahr’s Disease is a rare neurodegenerative disease, it is genetically inherited neurological disorder characterised by calcium deposits in areas of the brain that control movement. We also support people with Fahr's Syndrome, which is similar to Fahr's Disease but usually is not attributable to a single cause and it is more likely to be due to environmental factors (e.g., toxicity or trauma). To complicate matters Fahr's is also known by over 30 other names, such as Primary Familial Basal Ganglia Calcification (PFBGC).

 

Fahr Beyond is the only charity in the world to support people with Fahr’s, although Fahr’s is commonly misdiagnosed as Parkinson’s or Alzheimer’s, it could be estimated that there are ~8,000 people in the UK and globally ~200,000 Living with Fahr’s.

Activities

Fahr Beyond works closely with medical professionals at the National Hospital for Neurology and Neurosurgery in London, we are proud to have had an instrumental role in creating the Fahr’s Service within the Movement Disorders clinic, and key links with the Neurogenetics clinic.

Fahr Beyond provides educational resources and develops a sense of community. We also are developing an allied healthcare offer. 

No current opportunities

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