Patients living with the condition, and others caring for family members with EB, will outline their concerns about the shortfalls in care to TDs.

They are to treat epidermolysis bullosa (EB) in Ireland.

Casey Connors, 12, from Clondalkin, is getting help to brief her new teachers and classmates before she starts secondary school in the autumn

Farrell took part in the event to raise money for Debra, the national charity supporting people living with epidermolysis bullosa.

The actor is running the Irish Life Dublin Marathon, with Emma Fogarty, who has the condition epidermolysis bullosa, joining him for the final 4km.

Bobby Clifford was diagnosed with epidermolysis bullosa shortly after his birth.