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A NEW CENTRE to help to diagnose rare diseases among Irish patients has been opened in the Mater Hospital in Dublin.
The National Rare Diseases Office (NRDO) was opened this morning by Health Minister Leo Varadkar. He said that the office will seek to work closely with families affected by rare diseases because they are often “the leading experts in their diseases”.
A rare disease is defined as one which is life threatening or chronically debilitating and affects fewer than five individuals in 10,000. Some examples include haemophilia, muscular dystrophy or Batten’s Disease.
About 80% of rare diseases are genetic.
Although the diseases may individually be rare, collectively they are numerous and it’s estimated that about 6% of the population will be affected by a rare disease at some point in their lives.
As such, patients often find it difficult to get specialist treatment in Ireland. Some rare disease sufferers have even said that doctors have thought they were making their symptoms up.
The new National Rare Diseases Office will seek to help this in a number of ways. It intends to:
- Develop a database of rare diseases.
- Set up a helpline later this year for patients and doctors to consult.
- Provide information about disease treatment and management locations.
- Research methods of care and testing.
“A very large number of diseases are classed as rare, somewhere between 5,000 and 8,000, but they affect millions of people across Europe,” the minster said at today’s opening.
“We know that people living with a rare disease and their families, especially parents of young children, are often the leading experts in their diseases. It’s important that we recognise this and provide the necessary supports.”
The NRDO will be located at the Mater Misericordiae University Hospital until the new Childrens Hospital opens when it will be moved there.
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