Job Description
The Rare Disease Care Coordinator will play a pivotal role in the coordination of multidisciplinary rare disease care pathways, patient and family rare disease support, advocacy and education.
* Collaborate with the multidisciplinary team and relevant stakeholders to deliver high-quality and effective rare disease services.
* Identify service quality improvements through a partnership approach.
The coordinator will work closely with national experts on data reporting requirements and standards and continuous quality improvement.
Candidates will interact with adult centers to ensure continuity of care, promote independence, and reduce the risk of poor health outcomes.
Available Opportunities:
* MetaBERN - Full time: Focuses on inherited metabolic diseases and is driven by patient-centered care and a culture of continuous quality improvement.
* ERN Cranio - Full time: European Reference Network for rare and/or complex craniofacial anomalies and ear, nose and throat disorders.
* Endo ERN - Part time: Opportunity to be part of a world-class team delivering excellent care, driving research and collaboration across disciplines.
* ERN Transplant Part time: Joint transition clinics are held with nephrology consultants.
* ERKNet - Part time: Co-Lead of the European Rare Kidney Disease Network with adult services located at Beaumont Hospital.
* ERN BOND - Part time: Paediatric co-lead for ERN BOND based in the Department of Endocrinology.
Requirements:
* Be a healthcare professional with a recognized professional qualification in a therapy or nursing grade.
* Have 5 years full-time (or equivalent) years post-qualification clinical experience.
* Demonstrate evidence of continuing professional development relevant to the clinical specialty area.
* Demonstrate achievement in areas of clinical audit, quality improvement initiatives, practice development, teaching and research.