Rare Disease in Ireland - Your experience survey

The Genetic and Rare Disorders Organisation (GRDO) is gathering information on the experiences of people in Ireland (and their carers) living with rare conditions. Together with the Medical Research Charities Group (MRCG) and the Irish Platform for Patients' Organisations, Science and Industry (IPPOSI) and their patient representatives, they 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. This initiative aims to ensure that the voices of individuals affected by rare diseases are heard by the decision makers in health and social care. All information we use will be anonymised, although respondents are invited to give their contact details as an option if they wish to stay in touch.
https://www.surveymonkey.com/s/Rare_Disease_in_Ireland_Your_Experience