Welcome to An Easyguide to Rare Diseases in Ireland and Consensus for Action
The aims of this guide are to:
•Explain what a rare disease is and how it is defined in health policy
•Provide insights into living with a rare disease
•Identify priorities patient advocacy groups would urge the Irish Government to include in the Programme for Government, 2020 and beyond, including Sláintecare and the annual HSE Service Plans
•Provide an overview of policy and research developments at international and national policy levels
•Provide sources of information and support for rare diseases, including the National Rare Diseases Office (NRDO) and rare disease patient organisations across Ireland.
We would like to thank our colleagues in the Rare Disease Taskforce, and in particular Philip Watt at Cystic Fibrosis Ireland, for all of the work done to put this guide together. Most importantly we want to thank all of the individual contributors for providing us with a window into their lives showing the challenges of living with a rare disease in Ireland.
If you have any thoughts or comments about this guide or have any questions for us, please don’t hesitate to contact us at firstname.lastname@example.org