Stephen Donnelly (Wicklow, Fianna Fail)
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Epidermolysis bullosa is a rare, life-long genetic condition which causes fragile, blistering skin.

There is no doubt that Epidermolysis Bullosa places a substantial medical, social, and financial burden on patients and carers.

I fully appreciate the difficulties experienced by patients suffering from this painful condition.

There are approximately 300 patients in Ireland with Epidermolysis Bullosa, with approximately 60 new patients presenting with a diagnosis annually.

At present we have a two-centre approach to treating patients; there are approximately 158 patients currently registered between Children’s Health Ireland and St. James’s Hospital.

Children’s Health Ireland currently have one permanent Clinical Nurse Specialist who provides home care and outreach care. This Clinical nurse specialist is community-based and engages with all registered Epidermolysis Bullosa patients on a regular basis.

The service offered by the nurse specialist is pivotal to ensuring that hospital and community-based services are appropriately aligned.

An important example of this work includes securing home nursing care packages ranging from 9 hours to 20 hours for patients.

This service provides expert guidance for families, alleviates anxieties and offers referrals to psychological support in Children’s Health Ireland and the DEBRA Ireland family support service.

In addition, I am pleased to advise that Children’s Health Ireland are also in the final stages of recruiting an Advanced Nurse Practitioner role in Dermatology.

This appointment is another positive development in terms of services for children.