The Irish Haemochromatosis Association has called for a national strategy to diagnose and treat the blood condition haemochromatosis.
Ireland has the highest incidence of hereditary haemochromatosis sometimes called "The Celtic curse".
According to the IHA, 20,000 people have been diagnosed with the condition while at least another 20,000 are unaware that they have it.
Hereditary haemochromatosis is an iron-overload in the blood caused by a gene that is prevalent in fair skinned people of Celtic and European origin.
If left untreated it can cause irreversible damage to organs of the body including the heart, pancreas and liver.
Professor John Ryan, a liver expert at Dublin's Beaumont Hospital, says the condition can cause "liver-scarring, cirrhosis, or cancer".
Speaking on the RTÉ radio News At One, Professor Ryan said Ireland should be leading the way on the diagnosis and care of people with the condition.
"We've the highest rate in the world," Professor Ryan said.
"One in 83 people are predisposed to it or have it. Treament should be the same in all parts of the country."
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Backing calls for a national strategy to diagnose and treat the disease, Professor Ryan said symptoms can often be vague so many people do not catch it early enough.
"Half of the people would have fatigue and joint pain," he said.
"Young people might be quite tired."
He believes a screening programme should focus on adults over 30.
Anna McCarthy - an avid sea swimmer from Dublin - was diagnosed with hereditary haemochromatosis 11 years ago.
She found out through a routine blood test while vising her GP.
"A normal iron level for a women should be about 40," she said.
"Mine was up at 600. Had the doctor not discovered it then I would have been left with severe liver issues."
The good news is that treatment is effective.
Pints of a patient's blood are drawn off at regular intervals to bring down the iron or Ferritin levels.
"I think it was about 40 pints I had taken off to get back to within normal levels," Ms McCarthy said.
Once stablised, patients can manage the condition through diet according to Professor Ryan, who works as hepatologist at Dublin's Beaumont hospital.
"Patients should avoid red meat, alcohol and supplements," he said.
He added that many breakfast cereals were fortified with iron and should also be avoided.
Drinking a cup of tea with a meal inhibits the absorption of iron from food.
Responding to the call for a national strategy the HSE said hereditary haemochromatosis was the most common genetic disease in Ireland.
The HSE said the diagnosis, treatment and management of patients was guided by a model of care developed with the Irish College of General Practitioners.
One upside to this genetic disease is that blood donations from haemochromatosis patients can help the Irish Blood Transfusion Service to increase vital stocks of blood.
Once a patient's iron or Ferritin has returned to a normal level, they can donate blood to keep their levels low.
Ms McCarthy - who swam the English Channel last year to raise awareness of the condition - donates blood regularly to help manage her condition.
"The Irish Blood Transfusion Service is delighted with me because I give a pint of blood every three months," she said.