Oireachtas Joint and Select Committees

Wednesday, 15 October 2025

Joint Oireachtas Committee on Health

Treatment of Rare Diseases: Discussion

2:00 am

Professor Michael Barry:

I used to be the chair of it. Essentially, it was people who had expertise in the area of paediatrics and adult medicine. We would invite patients and patient groups to come in and present to us. I found it really useful, particularly around the time of spinal muscular atrophy, SMA. I thought the testimonies from patients and parents were really moving.

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