The National Association for Colitis and Crohn's Disease wants the Government to establish a register of people suffering in order to pin down the actual scale of the illness.
Only a fraction of hospitals in the UK hold a database and NACC says care and support would improve if health chiefs had a more robust register.
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Hide AdChief executive Richard Driscoll said: "NACC will be emphasising to government policy-makers and NHS managers and doctors that Colitis and Crohn's disease are serious life-long and sometimes life-threatening conditions affecting about one in 250 of the population.
"The provision of a register will significantly improve patient care and research in the long term."