Oireachtas Joint and Select Committees

Wednesday, 22 June 2022

Joint Oireachtas Committee on Health

Rare Diseases: Discussion (Resumed)

Photo of Seán CroweSeán Crowe (Dublin South West, Sinn Fein) | Oireachtas source

I am conscious that Deputy Burke wants to come in. I will follow on from what we have been talking about. I am conscious that in the cases of rare diseases, if a family has a child who is dying, they will try anything. We come across campaigns on gofundme.comand so on. Some treatments are selling hope to people. I am not saying that this happens a lot, but we hear of the charlatans who are involved in selling hope to unfortunate families and individuals. What supports are there to try to prevent this type of treatment, such as that which would recommend someone who has cancer to give up all their medicines and try something else? On social media there is a cure for everything. What structures are in place to try to prevent that? I am struggling for words here, but I think Dr. Martin gets a sense of what I am trying to ask. I am conscious of families who are in that situation. They are probably looking up the Internet as we speak to see if there is something in some part of the world that has worked for someone in their situation.

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