Social network you want to login/join with:
European Reference Network (ERN) - RITA / Rare Disease Care Coordinator, Dublin
col-narrow-left
Client:
Tallaght University Hospital
Location:
Dublin, Ireland
Job Category:
Other
-
EU work permit required:
Yes
col-narrow-right
Job Reference:
89d27d4bdbc0
Job Views:
3
Posted:
30.06.2025
Expiry Date:
14.08.2025
col-wide
Job Description:
Job Title:European Reference Network (ERN) - RITA / Rare Disease Care Coordinator
Grade Code: 3070
Reference No: 06.030 (2025)
Department/Directorate:Medical Directorate
Reports to: ERN Clinical Lead/Co Lead on the Rare Disease Programmer of work & to the Director of Nursing/HSCP Manager as appropriate
Tallaght University Hospital (TUH) is one of Ireland’s largest acute teaching and learning hospitals, with adult, psychiatric and age-related healthcare on one site. The Hospital has 472 inpatient adult beds, 74 onsite day beds for Dialysis, Oncology, Infusion, Haematology, Cardiology, Bone & Joint and minor surgery services. The Hospital also has a Day Surgery Centre located near the Hospital which has four theatres and 25 bays for elective surgery. There are an additional 61 offsite beds under its governance. The Hospital is staffed by over 4,000 people with 64 different nationalities represented on the team.
The Hospital is a provider of local, regional and national specialties. It is a designated trauma unit incorporating the National Pelvic and Acetabular Unit, a national Urology Centre and the second largest provider of renal dialysis services in the country.
One of the two main academic teaching hospitals of Trinity College Dublin - TUH specialises in the training and professional development of staff in areas such as Medicine, Nursing, Health & Social Care Professionals, Emergency Medicine and Surgery, amongst many others. TUH is part of the Dublin Midlands Hospital Group which serves a population of over 1.2 million across seven counties.
The Hospital is an exciting and dynamic place to work, in the midst of implementing a new hospital strategy, the team have already delivered on the opening of a new Renal Dialysis unit, Reeves Day Surgery Centre, a step-down facility in the community, a new ICU and the development of a supraregional Endometriosis Service. It is an exciting time to join the TUH team and one of Ireland’s main teaching hospitals with so many plans to enhance patient care. The Hospital believes in investing in their team and offers excellent education and research opportunities.
TUH Vision and Values
The vision of the Hospital is “People Caring for People to Live Better Lives” through excellent health outcomes supported by evidenced based practice, positive patient and staff experience in an empowering and caring environment. A culture of innovation and quality improvement in everything we do.
Our TUH CARE values – for patients, their families, our community and staff are:
1. Collaborate – together and with our academic and care partners
2. Achieve – our goals, positive outcomes and wellbeing
3. Respect – for patients, each other and our environment
4. Equity – for patients and staff
5. Co-ordinate patient care plans across cross-sectoral specialties and disciplines
6. Establish and support the development of agreed rare disease referral pathways and processes across both acute and community-based settings
7. Provide specialist support, information and liaison services to patients/families and carers, acting as first point of contact
8. Assist in the effective transition from paediatric services to adult services as required
9. Participate in the development and implementation of rare disease care pathways, such as that approved for systemic vasculitis, in collaboration with patient organisations and multidisciplinary stakeholders and the National Rare Diseases Office (as required)
10. Attend planning, progress and review multidisciplinary team meetings, including establishing a national virtual MDT platform to include all RITA-Ireland sites
11. Administer a rare disease database to facilitate case management, coordination and data collection, where required
ERN Coordination and Support
12. Support the Clinical Lead in the coordination of ERN RITA activities
13. Assist the Clinical Lead in the referral process via the ERN Clinical Patient Management System (CPMS)
14. Collaborate with and line manage the Data Manager on the development and maintenance of a rare disease database and/or registry
15. Contribute to rare disease clinical trial coordination
16. Assist in the consenting of patients and families for rare disease registries
17. Work with RITA-Ireland sites to ensure appropriate data governance processes are in place
18. Support the Clinical Lead and Data Manager in the annual ERN audit process
19. Support the Clinical Lead and Data Manager in the ERN 5 yearly evaluation process and relevant documentation
Education and Awareness
20. Contribute to the education and awareness of rare immune diseases and the available treatments and resources for healthcare professionals, patients, families and relevant external agencies
21. Develop materials and mechanisms for educating referrers and community-based teams on matters relating to RD presentation, assessment and management
Psychosocial Support
22. Identify how the service can offer practical and psychosocial support across the RITA-Ireland network to build the capacity of patients and caregivers to improve quality of life outcomes
23. Establish and develop links with relevant rare disease patient organisations to develop a patient partnership approach
Rare Disease Service Quality and Improvement
24. Commit to adopting a patient partnership approach to ensure patients and families with lived experience of rare diseases inform service developments
25. Develop relevant SOPs and guidelines as applicable to support the effective operation of the service
26. Develop and administer KPIs, outcome measures and a process for monitoring quality of care and measuring service impact and performance
27. Participate in clinical risk management and identify areas for improvement where required
GENERAL ACCOUNTABILITY:
28. Commitment to continuous professional development including completion of relevant internal training programmes available through our Centre for Learning & Development Prospectus.
QUALIFICATIONS / EXPERIENCE REQUIRED
Must have:
29. Be a Health Care professional with a recognised professional qualification in a Therapy or Nursing grade
30. Be entitled to be so registered on an appropriate professional register e.g. CORU, NMBI or other appropriate clinical/professional register.
31. Minimum of 5 years’ experience post qualification
32. Demonstrated experience of working in partnership with clinicians, patients and caregivers to improve care outcomes
33. Experience delivering quality improvement in a healthcare environment
34. Previous management experience
35. All candidates must demonstrate evidence of continuing professional developmentin the form of post-graduate qualifications or relevant courses.
36. Experience working in and leading a team in an acute hospital environment
37. Experience with Microsoft Office Suite, including Outlook and Excel
Desirable criteria:
38. Experience working in a rare disease or specialist care setting
39. Recognised postgraduate qualification relevant to role
40. Demonstrated achievement in the areas of clinical audit, quality improvement initiatives, practice development, teaching and research
REWARD & RECOGNITION
41. Remuneration is in accordance with the Department of Health Consolidated Salary Scales, effective1st March 2025 -€69,998-€81,228
42. The appointment is fulltime, permanent and pensionable
43. The annual leave entitlements in line with the terms and conditions of the relevant clinical grade. The leave year runs from 1st April to the 31st of March each year
44. Normal working hours are in line with the current clinical grade. Your contracted hours of work are liable to change between the hours of 8 am to 8 pm over 7 days to meet the requirements for extended day services in accordance with the terms of the Framework Agreement
#J-18808-Ljbffr