The National Rare Diseases Office (NRDO) was established by the HSE in 2015. We are the national rare disease ‘coordination hub’ and the HSE main contact and driver of rare disease initiatives and projects. In accordance with the National Rare Disease Plan for Ireland (2014-2018) and the HSE Model of Care for Rare Diseases (2019), our aim is to support people with rare conditions and their families by improving accessibility and quality of services.
What we do
- Provide evidence-based information through the National Rare Disease Information Line, a free information service
- Drive implementation of recommendations in the National Rare Disease Plan for Ireland and HSE Model of Care for Rare Diseases
- Orphanet Ireland host and curator
- Co-ordination hub - to support integration of national centres of expertise in rare conditions and European Reference Networks into the national health care system
- Development of integrated care pathways for rare conditions
- Education and Training - to lead and further develop national education initiatives and tools
- Participate in EU funded grants and collaborative research initiatives as appropriate e.g EU4Health Programme, EC ERN Joint Action for ERN Integration, OD4RD Orphanet Grant, RD Partnership
National Rare Diseases Office - Contact Details
Address: National Rare Diseases Office, Mater Misericordiae University Hospital, Eccles St., Dublin 7.
Email: rare.diseases@mater.ie
Rare Diseases Information line: 01 854 5065
Monday to Thursday 9.30am to 1.30pm
