Simon Harris (Wicklow, Fine Gael) | Oireachtas source

I assure Deputy Dooley that my answer was not meant in any way to suggest that everything is absolutely appropriate and adequate in this regard. We need to do better, which is the reason I very much welcome the new clinical programme being worked on, of which EDS is a part. I believe the programme will be welcomed by patients with EDS and their families. However, the Deputy is entirely correct that the voices of patients and their families are extremely important as we develop these plans. I would very much welcome the opportunity to meet Deputy Dooley and the families to whom he refers in the coming weeks in order that we can ensure they make an input and to see if the State can do more to support them.

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