Fahr Beyond is a small volunteer-led charity based in the UK, and we help primarily by supporting patients with Fahr's Disease and their families. The charity was set up in response to an absence of information and support for patients with Fahr’s. Fahr Beyond is very fortunate to be supported by the UK's neurologists based at the National Hospital of Neurology and Neurosurgery. Due to the rare nature of the disease, there is a lack of funding and research into Fahr's, and it tends to be reported as an incidental finding rather than the aim of an investigation; this is why Fahr Beyond is working with the NHS to conduct research and facilitating the world’s first dedicate Fahr’s service, and importantly a national hub for the care of Fahr’s patients.
Fahr Beyond is working to strengthen links to a national referral clinic at the National Hospital for Neurology and Neurosurgery with a much larger offer of support, and beyond that, we look as a charity to develop an allied health provision. We would like to work with medical professionals to support research, specifically, that will help in advancing new diagnostic and management frameworks for Fahr's (and if possible seeking drug therapy possibilities). Most importantly we continue to develop educational resources.
(More information about Fahr’s Disease can be found on Fahr Beyond’s website )