Rare Diseases Ireland (RDI) has launched its guide to rare diseases in Ireland to assist in policymaking around these conditions.
An Easyguide to Rare Diseases in Ireland and Consensus for Action aims 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
The Guide lays out RDI’s priorities for Ireland’s Government over the next ten years, including:
- Full implementation of the National Rare Disease plan (NRDP)
- Additional resources for prevention, diagnosis and care
- Additional resources and responsibilities for the National Rare Diseases Office
Read more here.