Oireachtas Joint and Select Committees

Wednesday, 28 February 2024

Joint Oireachtas Committee on Health

Health Services for People with Epidermolysis Bullosa: Discussion

Photo of John LahartJohn Lahart (Dublin South West, Fianna Fail) | Oireachtas source

In their first term, very often, Deputies are hit with everything and if they are lucky and privileged enough to be elected for a second term, certainly in my case, they realise they cannot solve every problem so they try to advocate for some key issues. Rare disease became an area of interest for me. For Huntington's disease for example, we went through a process. The advocates came before us and presented to Members of the Oireachtas in the audiovisual room. While we have not got a pathway of care for them, there have been some pronounced improvements there. Through the Cathaoirleach, that facility is open to Debra Ireland to seek to come in to address Members. They may be coming and going because there are many things going on. However, it would give the organisation about 45 minutes to raise its profile. The profile piece-----

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