Rare Disease, Clinical Care Coordinator

The 2025 New Service Development (NSD) initiative aims to support the implementation of the National Rare Disease Strategy for 2025-2030. This Strategy is designed to meet the needs of the estimated 300,000 people living with a rare disease in Ireland. It seeks to establish a comprehensive framework designed to improve diagnosis, treatment, and support for individuals with rare diseases.

Its goal is to create a more inclusive healthcare system that addresses the unique challenges associated for people living with a rare disease (PLWRD). The primary objectives are to enhance the quality of life for patients, promote equitable access to healthcare, and encourage innovation in rare disease research and treatment. The Strategy makes several recommendations across a variety of domains

The focus of the initiative and its sub initiatives you are being commissioned to advance are aimed at achieving the following:

• Addressing the current and significant gap for patients/PLWRD and rare disease services at ERN leading sites across two main areas:
• 1) Care Coordination and
• 2) Data Management

The main focus of NSD 2025 resources and funding is to:

• Improve care coordination for patients/PLWRD
• Enhance service efficiency, thus reducing wait times for some services
• Improve patient experience and outcomes
• Ensure ERNs are compliant with reporting obligations
• Ensure accurate recording and reporting of rare disease data to support rare disease surveillance and reporting, RD registries and the provision of ERN service activity levels.

The Rare Disease (ERN) Care Coordinator will have a central role in the coordination of multidisciplinary rare disease care pathways, patient and family rare disease support, advocacy and education. In collaboration with the MDT and relevant stakeholders, the post holder will contribute to the delivery of a quality and effective rare disease service and identify service quality improvements through a patient partnership approach.