Oireachtas Joint and Select Committees

Wednesday, 22 June 2022

Joint Oireachtas Committee on Health

Rare Diseases: Discussion (Resumed)

Dr. Maggie De Block:

I did not have the time to study the Irish system. I thought I would explain ours and how we improved it. I am sorry but I can and will do it before sending a written response to the question.

We must take into account all the stages. This includes procedure and how negotiations are done. We must, of course, shorten the periods because people with rare diseases are waiting and some have no time. Spinraza is an example. People who are treated on diagnosis have a much better quality of life than people who have for years not had the right therapy for their symptoms. I would like to help the committee in that regard but to do so I would need information on the necessary data indicating where the process is taking too long, for example.

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