RARE DISEASES IRELAND City: Phone :
Ireland first participated in Rare Disease Day in 2008. Since then Rare Disease Day has been marked annually on the last day of February with patient organisations coming together to host public information meetings and conferences bringing together stakeholders from across the country.
In 2017, a joint cross-border conference was held: "A North/South conference on Rare Disease in Ireland". Three key themes were addressed:
- The Orphan Drug Debate: Will new and innovative drugs for rare diseases be funded in Ireland
- Genomics and genetic services: Is Ireland keeping pace with the rest of Europe?
- An update on National Rare Disease Plans: The challenges and the progress
The meeting, held at the Royal Hospital, Kilmainham, Dublin, saw presentations from a range of individuals, including patients & their families, patients organisation representatives, health care providers and health care policy makers. The meeting was well attended and gave all involved an opportunity to meet, network and connect. The meeting was organised and hosted by Ireland's Rare Disease Taskforce, made up of members from Rare Diseases Ireland (GRDO), IPPOSI and MRCG, together with colleagues from the Northern Ireland Rare Disease Partnership (NIRDP).
Rare Diseases Ireland (GRDO) is the Irish national alliance representing the views and concerns of those living with a rare disease in Ireland. They can be contacted directly via [email protected]