Draft:Fahr Beyond
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Submission declined on 21 June 2026 by Grapesurgeon (talk).
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This draft has been resubmitted and is currently awaiting re-review. |  |
Comment: I think possibly notable, but not adequately proven by sources. Needs more secondary coverage; stuff that's more than just a WP:PASSING mention grapesurgeon (talk) 11:13, 21 June 2026 (UTC)
| 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 |
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]
The organisation is registered with the Charity Commission for England and Wales, operates throughout England and Wales, and is listed as an organisation by the National Organization for Rare Disorders (NORD).[2]
History
[edit]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.[3] 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.[4]
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.[4] 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.[5]
Activities
[edit]Patient and family support
[edit]Fahr Beyond provides information resources, signposting, and community support for individuals living with Fahr's disease and their families.[6] The charity facilitates peer connections and offers guidance on navigating clinical pathways within the National Health Service.[7]
Medical collaboration
[edit]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.[8] 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).[9]
Fahr Beyond is a supporter of the international CALCIFADE study, which investigates the efficacy of etidronate in slowing or preventing brain calcification.[10]
Research and awareness
[edit]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.[11] The charity's outreach work and awareness initiatives have also featured in rare disease publications such as Rare Revolution Magazine.[12]
Recognition
[edit]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.[13] The organisation is also a registered stakeholder for the National Institute for Health and Care Excellence (NICE) regarding clinical guidance for chronic neurological disorders.[14] Its advocacy work has also been noted in UK Parliament proceedings.[15]
Governance
[edit]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
[edit]For the 2024 financial year, the charity reported an income of £2,984 and expenditure of £5,654.[1]
See also
[edit]References
[edit]- 1 2 "Fahr Beyond". Charity Commission for England and Wales. Retrieved 25 March 2026.
- ↑ "Fahr Beyond". National Organization for Rare Disorders. Retrieved 26 July 2026.
- ↑ "FAHR BEYOND - Company number 10545212". Companies House. Retrieved 26 July 2026.
- 1 2 Clements-Thrower, Antony; Shobowale, Sali (20 March 2023). "Scout leader given eight years to live after freak zipline accident leads to diagnosis". The Mirror. Retrieved 25 March 2026.
- ↑ Batla, A. (2020). "Primary familial brain calcification: clinical and genetic update". Journal of Neurology. doi:10.1007/s00415-020-09762-3.
- ↑ "Fahr's syndrome". The Brain Charity. Retrieved 26 July 2026.
- ↑ "About Us". Fahr Beyond. Retrieved 25 March 2026.
- ↑ Magrinelli, F.; et al. "Fahr's disease: Practical neurology guide" (PDF). Practical Neurology. BMJ / UCL Discovery. Retrieved 26 July 2026.
- ↑ Tate, A.; Batla, A. (2023). "Fahr's disease: a patient perspective of presentation and clinical expectations". Journal of Neurology, Neurosurgery, and Psychiatry. 94 (Suppl 1): A38. doi:10.1136/jnnp-2023-ABN.117.
- ↑ "CALCIFADE: A study to evaluate the effect of etidronate on brain calcification". ISRCTN Registry. Retrieved 25 March 2026.
- ↑ "Research". Fahr Beyond. Retrieved 25 March 2026.
- ↑ "Fahr Better to Know". Rare Revolution Magazine. Retrieved 26 July 2026.
- ↑ "Fahr Beyond: Points of Light". Government of the United Kingdom. Retrieved 25 March 2026.
- ↑ "Stakeholder List: Rehabilitation for chronic neurological disorders". NICE. Retrieved 25 March 2026.
- ↑ "House of Commons Business". UK Parliament. Retrieved 26 July 2026.
External links
[edit]Category:Charities based in the United Kingdom Category:Health charities in the United Kingdom Category:Neurology organizations Category:Organizations established in 2021
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