Previous Campaigns

Get Rare Aware

Ireland has only half the staff it needs for genetic services

On 23rd March 2023, Rare Diseases Ireland launched the ‘Ending the Wait’ Report which compared the genetic services provided in 5 different health services (Ireland, Northern Ireland, England NE Thames, West Norway and Queensland Australia). Ireland was a negative outlier across a range of different variables.

On 27th March 2023, Rare Diseases Ireland launched the first Get Rare Aware campaign which focused on the chronic under-resourcing of genetic services in Ireland and the fact that patients were waiting 2 years to have a consultation on their genetic test results which are the key to a definitive diagnosis. This is in stark contrast to our nearest neighbour in Northern Ireland where patients only wait 3 months for the same service. Over the course of 6 virtual launches in each of the Regional Health Areas, a broad range of consultant physicians and patient representatives highlighted the critical need for a timely diagnosis and the fact that patient-facing administrative support for this service would dramatically improve timelines.

On 28th May 2023, Dr. Mark Bale, Interim Director for the National Office for Genetics and Genomics confirmed that funding for the office would include the recruitment of ‘…a number of roles including additional clinical geneticists, genomic resource associates, and genetic counsellors.’ 12

On 28th June 2023, Rare Diseases Ireland hosted an AV Room event at Leinster House to update elected representatives on the status of the Get Rare Aware campaign and answer questions.