Rare disease services
Deputy Neasa Hourigan highlights the scale of rare conditions and the difficulty of accessing appropriate treatments and technology. The Tánaiste notes earlier progress on a rare diseases strategy and office, but says updates are limited and the Minister will be asked to reply.
The challenges of living with a rare condition are acknowledged in the programme for Government, which states that rare conditions are complex, their impacts are severe on the patients living with them and it can at times be difficult to access appropriate medication and technology. It is estimated that there are 300,000 people living with rare conditions in Ireland, 4% of whom are children and have received their diagnoses by the time they are 16 years of age. While rare diseases are individually rare, they are collectively common. Last week, the Joint Committee on Health heard that Ireland has one fifth of the genetic specialists needed to service the population and that genetics and genomics in general are services that seem to be in a powerless state. According to the programme for Government, the Government will publish an updated national rare diseases plan, promote research and clinical trials, establish a national genetics and genomics medicine network, and support the medical genetics service in Our Lady's Children's Hospital Crumlin. Will the Tánaiste indicate the progress in implementing these commitments?
Comment on this
As the Deputy stated, rare diseases in Ireland are not rare. While they are rare individually, they are common when they are added together. During my time as Minister for Health, I had the pleasure and privilege of developing Ireland's first rare diseases strategy and establishing the National Rare Diseases Office, but progress in recent years has been slow for many reasons. I am not in a position to give the Deputy a proper update on where we stand on the matters in question, but I will let the Minister, Deputy Stephen Donnelly, know that they were raised in the House and ask him to write to her to set out what is being done and what we plan to do.