NEARLY half of people with [...].
The report by Rare Disease UK (RDUK) discovered almost 20% of sufferers lived with their conditions for more than five years before they received an accurate diagnosis. More than 10% had to wait more than a decade.
Only 26% of the 600 people questioned said they were diagnosed within three months of first noticing symptoms.
Rare diseases are classified as those which affect one in 2,000 people. RDUK says such conditions are "surprisingly common", with 3.5m people in the UK experiencing one at some point in their lives.
Conditions include all childhood cancers, muscular dystrophy and Cockayne syndrome, characterised by poor growth and premature ageing.
Alastair Kent, chair of RDUK, said: "Many people living with rare diseases and their families have to go through years of medical tests and procedures before an accurate diagnosis can be made.
"Not only is it often a battle to get an accurate diagnosis, patients and families then struggle to find out the medical impact of a condition and how to manage it, on top of having to cope with day-to-day life without adequate support.
"The results of RDUK's survey hammer home the need for a co-ordinated national plan for the diagnosis, treatment and research of rare diseases."