4th June 2015:
Minister for Health, Leo Varadkar launched the National Rare Disease Office in the Mater Hospital today. Speaking at the launch the Minister said:
“This is a significant day for the management of rare diseases in Ireland.
"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.
"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.
“I see this new office becoming a focal point for rare diseases, building up information and expertise on treatment and services, nationally and internationally.”