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
NRDO and other RD Publications
National Rare Disease Plan for Ireland 2014-2018
Model of Care for Rare Diseases This document was developed by the National Clinical Programme for Rare Diseases
The Model of Care for Transition; The Model of Care for Transition from Paediatric to Adult Healthcare Providers in Rare Diseases has been developed to assist healthcare professionals who provide care for young adults with rare diseases. It outlines guiding principles to support the successful transition from paediatric to adult healthcare providers. The area of rare diseases involves highly specialised care. The national clinical programme for rare diseases would like to sincerely thank the healthcare providers, clinical programme teams, patient support groups and individuals who contributed to the development of the model of care. We hope the documents attached are useful for service planning and for clinical teams as they support young people in their transition journey.
Summary Model of Care for Transition Patient summary for transfer to an adult healthcare provider
Patient summary for transfer to an adult healthcare provider
Guide for planning the transition of young people with a rare disease from paediatric to adult healthcare servicesThe role of primary care in the management of rare diseases in Ireland
Designing rare disease care pathways in the Republic of Ireland: a co-operative model
Rare Disorders without Borders - Rare Disease Day 2013
HSE Clinical Strategy and Programmes Division Clinical Programme for Rare Diseases Workshop on Clinical Research in Rare Diseases 2018 Report
