The HSE 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. The NRDO’s programme of work is strategically aligned to the National Rare Disease Plan for Ireland (2014-2018) and the HSE Model of Care for Rare Diseases (2019). The NRDO is committed to informing, supporting and empowering people affected by rare conditions, their families/caregivers and healthcare professionals.
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 – an international rare disease online resource for healthcare providers and people affected by rare conditions and is the largest repository of rare disease information globally
- Rare Disease 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.
Rare Diseases Information line:
Email: rare.diseases@mater.ie
Telephone: 01 854 5065 Hours: Monday to Thursday 9.30am to 1.30pm
