Collection
Minutes and agendas from meetings of the National Rare Disease Steering Group
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From: Department of Health
- Published on: 8 May 2024
- Last updated on: 6 February 2025
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
