National Rare Disease Plan for Ireland 2014 - 2018

This is a generic policy framework for rare diseases. Its scope is broad and it applies to all rare diseases, which can number up to 8,000 diseases affecting millions of EU citizens.

This policy framework envisages a combined approach with our EU partners and Northern Ireland to diagnose and treat people with rare diseases. We must deepen links with facilities and institutions in other countries where specialist services are available that may be absent in Ireland.

The plan elaborates on Ireland’s participation in European Reference Networks, which is the networking of knowledge and expertise through reference centres and teams of experts. These links are emphasised in the report to address the care of patients with rare diseases at both national and European levels.