Mar
10
2026

The Health Research Podcast – Ep 6: Rare Disease Research

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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A legislative own initiative file in the Parliament’s new public health committee sets out what an EU “rare disease action framework” could look like — and why it could change how Europe measures progress for patients.
Drawing on Europe-wide patient and carer surveys, ERDERA highlights how gender can shape diagnostic delays, care burden and the evidence base for rare-disease research.
European Parliament research service assessment, published in February 2026, identifies 31 measures that could form an EU rare disease action plan, highlighting European Reference Networks and cross-border collaboration including ERDERA as drivers of EU added value.
On 24 February, in Brussels and online, EURORDIS will bring the rare disease community together for its fifteenth Black Pearl Awards ceremony, held in the lead‑up to Rare Disease Day.