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Joint Oireachtas Committee on Health: Rare Diseases: Discussion (26 May 2021): Annie Hoey: I thank Ms McGrath for that answer. I had a conversation with a person who suffers from a rare disease and who feels the only way it is possible to describe the situation at present is that there is a price on life in this country. The experience of the health system has left the person feeling that way. No treatment is currently available for the condition in question, but there may be in...
Joint Oireachtas Committee on Health: Rare Diseases: Discussion (26 May 2021): Annie Hoey: ...where it is known that a treatment for a condition may be available and the people with the condition are willing to do whatever is required because their lives are being affected, and yet they feel that the required political or medical support will not be forthcoming. I cannot imagine what it would be like to live with that feeling of facing an uphill battle to get support. Ms...

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