Mar
10
2026

The Health Research Podcast – Ep 6: Rare Disease Research

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This episode features Dr Avril Kennan Chief Executive of Health Research Charities Ireland, Dr Gráinne Gorman Chief Executive of the Health Research Board, and Gavin Lawler, HRB Programme Manager and co-ordinator of the Irish National Mirror Group on Rare Diseases.

News & Updates

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The session will introduce the workstream’s activities in data sharing, systematic diagnostic reanalysis, advanced diagnostic pipelines, and genomic and multi-omics innovation.
Bringing clinicians, researchers, patient representatives and families together, the event examined how shorter diagnostic pathways depend not only on better tests, but on shared expertise, structured phenotyping and patient-centred support.
ERDERA and the European Genomic Data Infrastructure have signed a Memorandum of Understanding to strengthen collaboration on secure cross-border access to genomic, clinical and other health-related data, supporting rare disease research and the development of personalised medicine in Europe.