Rare Diseases

Thu, Jun 3, 2021

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Neasa questioned the Government about their plans to publish an updated national rare diseases plan.

Transcript: 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 T├ínaiste indicate the progress in implementing these commitments?