Draft:Fahr Beyond
British charity for Fahr's disease
From Wikipedia, the free encyclopedia
Fahr Beyond is a charitable organisation based in the United Kingdom that supports individuals affected by Fahr's disease, Fahr's syndrome, and related primary brain calcification disorders. The charity provides patient support, raises awareness among medical professionals, and promotes research into the causes and management of these rare neurological conditions.[1]
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| Formation | 2016 (initiative) |
|---|---|
| Type | Registered Charity |
| Registration no. | 1197040 (England and Wales) |
| Legal status | Active |
| Focus | Fahr's disease, Fahr's syndrome, brain calcification disorders |
| Headquarters | United Kingdom |
Region served | England and Wales |
| Method | Patient support, awareness, research collaboration |
Key people |
|
| Budget | £5,654 (2024) |
| Revenue | £2,984 (2024) |
| Website | fahrbeyond |
The organisation is registered with the Charity Commission for England and Wales and operates throughout England and Wales.
History
Fahr Beyond was founded in 2016 as a volunteer-led initiative to address the lack of dedicated support and clinical information for people with primary brain calcification disorders. The organisation's inception was influenced by the clinical journey of its founder, Adam Tate, who was diagnosed with Fahr's syndrome in 2014 following a trauma-related investigation.[2]
The charity was formally registered on 10 December 2021. In the same year, the organisation expanded its operations to include occupational services and patient engagement webinars.[2] It emerged as a response to the rarity of the condition and the frequency with which it is misdiagnosed as other neurological disorders, such as Parkinson's disease or Alzheimer's disease.[3]
Activities
Patient and family support
Fahr Beyond provides information resources, signposting, and community support for individuals living with Fahr’s disease and their families. The charity facilitates peer connections and offers guidance on navigating clinical pathways within the National Health Service.[4]
Medical collaboration
The organisation works with clinicians at the National Hospital for Neurology and Neurosurgery in London, including the Movement Disorders Clinic and Neurogenetics services, to improve diagnostic accuracy and patient care. Findings from the charity's patient surveys have been utilized to help shape the Fahr's Disease specialist service at University College London Hospitals NHS Foundation Trust (UCLH).[5]
Fahr Beyond is a supporter of the international CALCIFADE study, which investigates the efficacy of etidronate in slowing or preventing brain calcification.[6]
Research and awareness
The charity promotes research into primary brain calcification disorders and disseminates scientific findings to the public. Fahr Beyond has conducted a large-scale Fahr's Disease Patient Experience Survey to identify the specific needs of the community. In 2023, the organisation presented research at the Association of British Neurologists (ABN) annual meeting regarding patient expectations and clinical manifestations.[7]
Recognition
In 2023, Tate was recognized by the Prime Minister of the United Kingdom with a Points of Light award for his work in the rare disease community.[8] The organisation is also a registered stakeholder for the National Institute for Health and Care Excellence (NICE) regarding clinical guidance for chronic neurological disorders.[9]
Governance
Fahr Beyond is governed by a board of trustees responsible for strategic oversight. As of March 2026, trustees include Dr Adam Tate (Chair), Prof Carina Fearnley, Dr Francesca Magrinelli, Ms Deepa Ramchandani, Mrs Vanessa Tate, and Mr Carl Ward.
Financial information
For the 2024 financial year, the charity reported an income of £2,984 and expenditure of £5,654.[1]