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.

The Genetic and Rare Disorders Organisation (GRDO) is currently gathering information on the experiences of people in Ireland 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.

This initiative aims to ensure that the voices of people affected by rare diseases are heard by the decision makers in health and social care. With the information you give us, we will produce a report which summarises your experiences. We will make recommendations for better support and services based on what you tell us.

If you have a rare disease, or if you care for someone who does, and you live in Ireland, please take a few minutes to fill in this questionnaire. Your views are important.

You can give us information anonymously or, if you want to stay in contact with us, please give your name and contact details at the end of the questionnaire. All information we use will be anonymised.

The survey questions cover the following topics:

1 - 5, General Information

6 - 7, Diagnosis and Referral

8 - 14, Treatment and Care

15 - 20, Information and Support

21 - 22, Education and Employment

23 - 26, Research into the Condition


If you have any questions about the survey or would like assistance with it contact kathy@grdo.ie
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PLEASE NOTE: If there is more than one person in your family with a rare disease, please ensure that a separate questionnaire is completed for each person.

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