Dáil debates

Wednesday, 6 July 2022

Ceisteanna ar Pholasaí nó ar Reachtaíocht - Questions on Policy or Legislation

 

1:02 pm

Photo of Chris AndrewsChris Andrews (Dublin Bay South, Sinn Fein) | Oireachtas source

DEBRA Ireland, an advocacy group for epidermolysis bullosa, EB, or butterfly skin, made its pre-budget submission in Buswells Hotel last week on behalf of the families of those who are living with EB. Emma Fogarty and Liz Collins made a powerful presentation on the difficulties and challenges that they face day in and day out. They have three asks in respect of the budget. The first is to create a ring-fenced fund for home nursing care for children and adults with EB. The second is to fund an EB outreach nurse. The third is to fund the clinical psychologist for those living EB. Will the Minister give consideration to their very modest request in the context of September’s budget?

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