IPH work on rare diseases

Did you know? It is estimated that between 5000 and 8000 rare diseases exist globally today affecting 6 to 8% of the population in the course of their lives

Work done in the past few years at European level in the field of rare diseases, and the experience of those countries where public health initiatives for rare diseases exist, show that a specific national approach and European collaboration can improve health and social care for people with rare diseases.

The European Project for Rare Diseases National Plans Development (EUROPLAN), developed as part of the Programme of Community action in the field of Public Health, developed resources to support establishment and implementation of National Plans in the field of rare diseases. Plans or strategies are recommended to be established by the end of 2013.  Health authorities of 27 EU member states, including Ireland and the UK, have signed a document stating their willingness to fulfil this deadline.

IPH is working with the Department of Health to support the work of the Steering Group on a National Rare Diseases Strategy, which was first convened in May 2011.