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

An evaluation of the inappropriate prescribing in older residents in long term care facilities in the greater Cork and Northern Ireland regions using the STOPP and Beers' criteria.

This work has highlighted a number of areas of prescribing concern, for example, the long term use of both benzodiazepines and hypnotics, in older residents residing in long term care facilities. Each of these individual areas should be further investigated to determine the underlying reason(s) for the prescribing concerns in these areas and strategic methods of addressing and preventing further issues should be developed on a national level.This resource was contributed by The National Documentation Centre on Drug Use.

Indications of Public Health in the English Regions 10: Drug Use

This tenth in a series of national reports produced for the Chief Medical Officer (CMO) by the Association of Public Health Observatories (APHO) is on drug use. The report contains 46 different indicators of drug use relating to the individual, community and population across all nine English regions; with additional analysis of sub-regional inequalities where possible. An Executive Summary is also available.

Indications of public health in the English regions 5: child health

This report, focusing on child health, is the fifth in a series of reports commissioned by the CMO and produced by the Association of Public Health Observatories. It examines geographical and socio-economic variations in indicators of child health in the English regions.

Indications of public health in the English regions - 6: sexual health

This report is the sixth in the series, "Indications of Public Health in the English Regions" commissioned by the Chief Medical Officer and has been produced jointly by the Association of Public Health Observatories (APHO) and the Health Protection Agency (HPA). Sexual health is identified as one of the key national priorities for action in the White Paper Choosing Health. Influenced by the broad definition of sexual health provided in the National Strategy for Sexual Health and HIV, this report presents regional comparative data on a wide range of indicators of sexual health and its determinants, and highlights apparent inequalities.

Indications of public health in the English regions - 8: alcohol

This report is the eigth in the series, "Indications of Public Health in the English Regions" commissioned by the Chief Medical Officer and has been produced jointly by the Association of Public Health Observatories (APHO), North West PHO, and LJMU Centre for Public Health. In 2006, the United Kingdom rated third highest across 25 EU member states for the number of drinks consumed in one sitting. This Regional Indications report is produced alongside the new national strategy Safe. Sensible. Social: The next steps in the National Alcohol Strategy.

Indications of public health in the English regions - 7: mental health

This report is the eigth in the series, "Indications of Public Health in the English Regions" commissioned by the Chief Medical Officer and has been produced jointly by the Association of Public Health Observatories (APHO) and the North East PHO. This report presents a wide range of data on the factors which can give rise to poor mental health, the mental health status of populations, provision of interventions of care for mental illness, service user experience and traditional outcomes such as suicide. In 2006, the United Kingdom rated third highest across 25 EU member states for the number of drinks consumed in one sitting. This Regional Indications report is produced alongside the new national strategy Safe. Sensible. Social: The next steps in the National Alcohol Strategy.

Indications of public health in the English regions - 4: Ethnicity and health

Part 4 of the Indications of Public Health for England. This report focuses on race equality and inequality terms of health and health care between ethnic groups in England. A separate Executive Summary is available (it is included in this full version of the report).

Indications of Public Health in the English Regions 4: Ethnicity and Health: Executive Summary

This is a summary of the main report that provides a comprehensive regional analysis of inequalities in health and health care between ethnic groups in England, and also examines workforce data by ethnic group.

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.