Rare Diseases: Statements
Dail Éireann — 2026-06-18
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Mark Ward (SF), Dublin Mid-West

I welcome the women's shed here as well. My family now lives in Wexford as well. My father is in the men's shed in Gorey and he loves it down there. Thank you, a Cheann Comhairle.
I am delighted to have the opportunity to talk about rare diseases. I have been contacted by many residents in my area about Duchenne muscular dystrophy. As the Minister knows, Duchenne muscular dystrophy is a severe, progressive genetic disorder that weakens muscles and affects around 100 children in Ireland. Two of those children are in my area. They are brothers Conor and Dean from Lucan. They are nine and ten years of age. I met with their parents, Karen and Jamie, as they fought to secure life-saving treatment for their two beautiful boys. They were campaigning for their boys to have access to the drug givinostat. Givinostat is not available for Duchenne muscular dystrophy in the Republic of Ireland despite being available across the North.

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/dail/2026-06-18/debate/main
Retrieved: 2026-08-27T06:54:51+00:00
Sitting date: 2026-06-18