Oireachtas Joint and Select Committees

Wednesday, 15 October 2025

Joint Oireachtas Committee on Health

Treatment of Rare Diseases: Discussion

2:00 am

Dr. Lesley Tilson:

For the NCPE process we engage with clinicians for all of the assessments that we undertake. Then similarly for patient organisations, we proactively reach out to patient organisations to invite submissions for all of the HTAs . For the wider reimbursement process there are clinicians on the drugs group and there is a public representative on the drugs group. There is also the rare diseases therapy review committee. Professor Barry may know the composition of that.

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