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

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

Ms Wynne said that the worst affected areas are Galway, Mayo ,Roscommon, Leitrim with Cavan, Longford, Sligo, Monaghan and Donegal also impacted.