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

Newborn blood spot screening for your baby (English and nine translations)

This leaflet gives information on newborn blood spot screening for babies and the rare but serious conditions it looks for.

Your activity record book (English and Irish)

The record book enables school children to record their activity levels as part of the Get a Life Get Active scheme.

The pregnancy book

This book provides information on many aspects of pregnancy and a list of useful organisations. It is available to first time expectant mothers through primary care services (antenatal clinics, GPs or health visitors).

Stop, Look and Cook: recipe book for schools in Northern Ireland

Nutrition is central to health and children's diets can be an important influence now and in the future. Stop, Look and Cook is a new recipe book for use by catering staff in all grant-aided nursery, primary and post-primary schools in Northern Ireland.�Recipes have been collected from school caterers across the region. These recipes have been checked to ensure that they are compliant with nutritional standards for school lunches and have been tested in schools for taste and suitability. In addition all the recipes have been analysed by the PHA using a nutritional software package, with a particular focus on fat, salt and sugar.�This recipe book provides approximately 280 recipes, giving schools more choice for menus. It also contains useful advice for dealing with food allergies and supplying alternative meals for pupils from other cultures.For more information on Stop, Look and Cook please contact the school meals catering manager at your local Education and Library Board.�

The pregnancy book

This book provides information on many aspects of pregnancy and a list of useful organisations.It is available to first time expectant mothers through primary care services (antenatal clinics, GPs or health visitors).�

The Pregnancy Book

This book provides information on many aspects of pregnancy and a list of useful organisations.It is available to first time expectant mothers resident in Northern Ireland through primary care services (antenatal clinics, GPs or health visitors).

Your activity record book (English and Irish translation)

This fun physical activity record book outlines the recommended physical activity guidelines for children aged 5 to 18 and includes an easy way for children to keep track of how much physical activity they are getting.(Irish translation of 2011 booklet)

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.