GRDO Patient Organisation Survey Introduction

A rare disorder is a disorder affecting fewer than 1 in 2000 people. The European Union Committee of Experts on Rare Diseases (EUCERD) estimates that between 6% and 8% of the population are affected by rare disorders, i.e. 270,000+ people in Ireland. 80% of rare disorders are of genetic origin, with many affecting children. No cure exists for the vast majority of rare disorders.

The mission of the Genetic and Rare Disorders Organisation (GRDO) is to provide a strong voice for voluntary groups representing people with or at risk of developing genetic or other rare disorders in order to achieve better support and services.

GRDO is currently gathering information relating to patient support and advocacy organisations operating in Ireland for people with rare conditions. GRDO, together with the Medical Research Charities Group (MRCG) and the Irish Platform for Patients' Organisations, Science and Industry (IPPOSI) and their patient representatives, will use this information to assist the National Rare Diseases Taskforce ('Towards 2013 - the National Plan for Rare Diseases') to engage with the Rare Diseases Steering Committee of the Department of Health. For more information on the National Rare Diseases Taskforce read 'Rare Diseases News' available at www.grdo.ie.

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