Minutes and agendas from meetings of the National Rare Disease Steering Group

2024
2023
Terms of Reference

The National Rare Disease Steering Group was established in December 2023. The Steering Group have been tasked with developing a new Rare Disease Plan for Ireland that sets out the vision for Rare Disease services in Ireland and the actions required to achieve this.

A rare disease is defined in Europe as a disease having a prevalence of fewer than 5 cases for every 10,000 persons. There are currently up to 8,000 described rare diseases. Collectively, these diseases affect around 6% of the population (accounting for an estimated 300,000 individuals in Ireland). The new Plan will seek to:

address gaps in Rare Disease services and ensure that patients and their families receive the right care, at the right time, in the right place
consider how best to integrate European Reference Networks into the national health service
identify the core practical requirements of a Rare Disease Registry
consider how to best promote rare disease awareness among healthcare professionals and the public
consider how to best promote participation in national and international research