A national multiple sclerosis database has been launched as a charity hit out at the care provided for sufferers.
The MS Society is to set up a UK-wide register that will provide a wealth of information for sufferers and those close to them, in the hope that it will lead to better care and research into the disease.
The NHS's chief knowledge officer Sir Muir Gray backs the campaign, as well as Jeremy Chataway of the National Hospital for Neurology and Neurosurgery.
Mr Chataway said: "We have been in the dark for far too long about MS. The MS Register has the potential to change that, to revolutionise patient care and services for people with MS and to streamline the way we conduct research in this country."
The UK is one of the worst performing countries in western Europe when it comes to MS treatment, according to the MS Society. It says Britain only comes above Bulgaria, Estonia, Lithuania and Poland, while care is 'patchy', benefits have been cut and there is only one specialist nurse for every 454 people.