National Rare Diseases Office

The National Rare Diseases Office (NRDO), based in the Mater Misericordiae University Hospital, Dublin, opened in June 2015. A Patient Information Booth for Rare Diseases can also be found at the Eccles St entrance area of the hospital.

The NRDO was established by the HSE based on one of the key recommendations of the National Rare Disease Plan 2014 – 2018. It provides up to date, reliable information about genetic and rare diseases to people and families living with a rare disease and to healthcare professionals. This includes:

• specific disease information
• clinical expertise available in Ireland and Europe
• social care supports
• patient support groups
• rare disease research and clinical trials, in Ireland and Europe
• Irish and European rare disease healthcare policy

Information about the National Rare Disease Office and the services it provides is available on their website here or by contacting rare.diseases@mater.ie or 01 854 5065.

Orphanet Ireland

Orphanet is a reliable source of information about rare diseases. It is a European wide platform that has specific databases for each country.

Orphanet Ireland is managed by staff in the National Rare Disease Office (NRDO). It contains descriptions of conditions and information about centres or expertise, support groups and ongoing research activities. You can access Orphanet Ireland on their website here.