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European Reference Networks
The National Clinical Programme for Rare Diseases (NCPRD) was established in December 2013, a partnership between the RCPI and the HSE with oversight provided by a multi-speciality Clinical Advisory Group (CAG). Professor Eileen Treacy was appointed as Clinical Lead. One of the programme’s first recommendations was the established of The National Rare Disease Office; the office was opened by the Minister for Health in June 2015 and is based in the Mater Misericordiae University Hospital, Eccles Street.
Following a review of all clinical programmes in April 2019, the Chief Clinical Officer (CCO) recommended that once a clinical programme has become involved in the provision of service, consideration should be given to operationalising the programme. This was recommended in the case of the National Clinical Programme for Rare Diseases, incorporating the National Rare Diseases Office. Since September 2020, the NRDO is the main contact point and driver for national rare disease projects and initiatives under the governance of Acute Operations, HSE.
What is a rare disease?
A ‘rare disease’ is defined in Europe as a life-threatening or chronically debilitating disease affecting no more than 5 people per 10,000. There are more than 6000 known rare diseases affecting up to 6% of the total EU population (at least 30 million Europeans). This means that at any time, approximately 300,000 people in Ireland have a rare disease.
Rare Disease Strategy and Policy
Across Europe much work has been done in highlighting needs of rare disease patients in relation to access to reliable disease information, diagnosis and care, treatment and research. Through this many EU countries including Ireland have drafted a plan to highlight the needs of rare disease patients and propose recommendations to better meet their needs and a plan to implement recommendations over the coming years. The first National Rare Disease Plan for Ireland, covering the years 2014-2018 sets out the background in Ireland for rare disease. There are national plans and strategies from European Commission (EC) relating to rare diseases that will help you understand EC policy in this area. Read more information on policy in rare disease in Europe.
If you have a query, or if your organisation works with rare diseases and you would like to share information with us, please contact us.
Learn more about rare diseases and stories from people with rare diseases with the Rare Diseases Ireland (RDI) An Easyguide to Rare Diseases in Ireland and Consensus for Action.
Rare Disease Ireland
Rare Disease Ireland is a patient advocacy national alliance for voluntary groups representing people affected by or at risk of developing a rare disease. www.rdi.ie
Learn more about rare diseases and stories from people with rare diseases with the Rare Diseases Ireland (RDI): An Easyguide to Rare Diseases in Ireland and Consensus for Action
Read RDI research report ‘Living with a Rare Disease in Ireland during the COVID-19 Pandemic
Resolution4Rare Join the global community of people living with rare conditions, led by Rare Diseases International, EURORDIS
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 diseases from paediatric to adult healthcare services
The 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
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