UK Strategy for Rare Diseases (PDF 1.88MB)

UK Strategy for Rare Diseases

National Rare Disease Plan for Ireland 2014-2018

  This is a generic policy framework for rare diseases. Its scope is broad and it applies to all rare diseases, which can number up to 8,000 diseases affecting millions of EU citizens. This policy framework envisages a combined approach with our EU partners and Northern Ireland to diagnose and treat people with rare diseases. We must deepen links with facilities and institutions in other countries where specialist services are available that may be absent in Ireland. The plan elaborates on Ireland’s participation in European Reference Networks, which is the networking of knowledge and expertise through reference centres and teams of experts. These links are emphasized in the report to address the care of patients with rare diseases at both national and European levels. Download the report here

National Rare Disease Plan for Ireland 2014-2018

National Rare Disease Plan for Ireland 2014-2018 This is a generic policy framework for rare diseases. Its scope is broad and it applies to all rare diseases, which can number up to 8,000 diseases affecting millions of EU citizens. This policy framework envisages a combined approach with our EU partners and Northern Ireland to diagnose and treat people with rare diseases. We must deepen links with facilities and institutions in other countries where specialist services are available that may be absent in Ireland. The plan elaborates on Irelandâ?Ts participation in European Reference Networks, which is the networking of knowledge and expertise through reference centres and teams of experts. These links are emphasized in the report to address the care of patients with rare diseases at both national and European levels. Download the report here  

Report of the Consultation for a National Rare Disease Plan for Ireland

This report presents findings from the National Consultation on Rare Disease overseen by the Institute of Public Health in Ireland on behalf of the Department of Health to inform the development of Irelandâ?Ts first National Rare Disease Plan. In 2009, the Council of the European Union recommended that all member countries develop a national plan for rare diseases with the framework of their health and social systems by the end of 2013. The aim is to ensure that all patients with rare disease in Europe have access to high quality care, including diagnostics, treatments and rehabilitation.  Download the report here

Report of the Consultation for a National Rare Disease Plan for Ireland

This IPH report (2013) (prepared for the ROI Department of Health) presents findings from the National Consultation on Rare Disease overseen by the Institute of Public Health in Ireland on behalf of the Department of Health to inform the development of Ireland’s first National Rare Disease Plan. In 2009, the Council of the European Union recommended that all member countries develop a national plan for rare diseases with the framework of their health and social systems by the end of 2013. The aim is to ensure that all patients with rare disease in Europe have access to high quality care, including diagnostics, treatments and rehabilitation.