Simon Harris (Wicklow, Fine Gael)

I thank the Deputy for referencing Les Martin, a person I know well from County Wicklow and somebody who has done incredible advocacy work in relation to this based on the lived experience of his two sons. I thank Les for that work too.

The points Deputy O'Sullivan makes are fair. The Minister has rightly reminded me that she is committed to a root-and-branch reform and examination of all the various processes in place in relation to rare diseases. The opportunity to bring forward the new rare diseases plan will be a chance to turbocharge our focus on some of these issues. However, we are already beginning to look at how we can do this in new ways. For example, the Minister, Deputy Carroll MacNeill, had engagement with her Italian counterpart in recent days on how we can co-operate and collaborate more across the European Union. Deputy O'Sullivan raised the issue of DMD in the House last week and we went to the North-South Ministerial Council. In fairness, it was also raised by Deputy Crowe. At the North-South Ministerial Council we immediately started a conversation about how our two departments of health can work together. On part of the island you might have the medication, while on another part of the island you might have the professionals. Particularly given that we live in a small country, collaboration at European level, across the island of Ireland and across Ireland and the UK are going to be important steps. The Minister is committed to continuing close engagement with the Deputy on it.

On the reimbursement piece, we have significantly increased the staff to try to speed up the timelines. We will keep in close contact.

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