Government urged to approve life-changing drugs to treat rare diseases

The Government is being today urged to provide better treatment for the estimated 300,000 Irish people with rare diseases.

Around 6,000 such diseases exist worldwide, many of which are genetic.

Today's interim report for the National Rare Disease Plan reveals that the State spent nearly €1.7m of projects for people with rare diseases last year.

While campaigners have welcomed the progress, they say there is little or no focus on genetics in the plan.

Philip Watt, chairperson of the Medical Research Charities Group, said that the Government needs to reduce the consultant waiting lists and provide better access to drugs.

Philip Watt

"There's some new innovative medicines becoming available to people with rare diseases, but unfortunately they come at quite a high cost, because the drug company has only a few people from which they can recoup their costs," he said.

"So we really are calling on the Government for these life-changing drugs to be approved and to give people with rare diseases a fair chance."


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