European Reference Network - Rare Neurological Diseases (ERN-RND) Care Coordinator (06.031 (2025))

Permanent Full-Time

Tallaght, County Dublin, Ireland

Job Details


Job Title: European Reference Network - Rare Neurological Diseases (ERN-RND) Care Coordinator
Grade Code: 3070
Reference No: 06.031(2025)
Department / Directorate:  Medical Directorate
Reports to: ERN Clinical Lead/Co Lead on the rare disease programmer of work and to 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.  

In 2017, a number of European Reference Networks (ERNs) were launched connecting more than 900 healthcare units across 26 countries within the EU, to improve access to expertise in rare, complex diseases and thereby improve healthcare quality, reduce inequalities of access, and increase medical expertise across the EU. Since 2022, Tallaght University Hospital has been a recognised site of expertise and full member of ERN-RND (Rare Neurological Diseases), ERN-RITA (Rare Immunological Disorders) and ERN-GUARD-Heart (Rare and Low Prevalence Complex Diseases of the Heart). Patients with these rare disorders can now expect to receive coordinated, patient-centred care from diagnosis to treatment and follow-up, and to be part of a European Network that sets the standard for care and ensures excellence in all facets of the rare disease care pathway.

www.ern-rnd.eu/
www.ern-rita.org/
www.guardheart.ern-net.eu/

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 specialise 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:
  • Collaborate – together and with our academic and care partners
  • Achieve – our goals, positive outcomes and wellbeing
  • Respect – for patients, each other and our environment
  • Equity – for patients and staff

At TUH we view our staff as our most valuable asset and every member of the Team is valued equally.  We recognise that a skilled, satisfied and motivated workforce is a prerequisite to high quality care.

A full overview of TUH is available on www.tuh.ie/about us

PURPOSE OF THE ROLE:
The Rare Disease ERN_RND Care Coordinator will have a central role in the coordination of multidisciplinary rare neurological 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 neurological disease service and identify service quality improvements through a patient partnership approach. 

The Care Coordinator will collaborate and work closely with the National Care Coordinator at the National Rare Diseases Office on (but not limited to) national data reporting requirements and standards and continuous quality improvement.

OVERVIEW OF ROLE:

Key Duties and Responsibilities

Patient Care Coordination
  • Co-ordinate patients' care plans across cross-sectoral specialties and disciplines
  • Establish and support the development of agreed rare neurological disease referral pathways and processes across both acute and community-based settings
  • Provide specialist support, information and liaison services to patients/families and carers
  • Assist in the effective transition from paediatric services to adult services as required
  • Participate in the development and implementation of rare neurological disease care pathways  in collaboration with patient organisations and multidisciplinary stakeholders and the National Rare Diseases Office (as required)
  • Coordinate and actively participate in multidisciplinary team meetings

ERN Coordination and Support
  • Support the Clinical Lead/Co Lead in the coordination of ERNRND activities 
  • Assist the Clinical Lead/Co Lead in the referral process via the ERN-RND Clinical Patient Management System​ (CPMS), if required
  • Collaborate with the team on the development and maintenance of a rare neurological disease database and/or registry
  • Support the implementation of ORPHA codes, the rare disease coding system Participate in updating information on Orphanet (European rare disease information database) as relevant to the service
  • Assist in the consenting of patients and families for rare disease registries
  • Support the Clinical Lead/Co Lead and Data Manager in the annual ERN-RND audit/reporting  process
  • Support the Clinical Lead/Co Lead and Data Manager in the ERN-RND 5 yearly evaluation process(AMEQUIS)  and compile relevant documentation  

Education and Awareness
  • Contribute to the education and awareness of rare neurological diseases and the available treatments and resources for healthcare professionals, patients, families and relevant external agencies
  • Develop materials and mechanisms for educating referrers and community-based teams on matters relating to RD rare neurological disease presentation, assessment and management

Psychosocial Support
  • Identify how the service can offer practical and psychosocial support to build the capacity of patients and caregivers to improve quality of life outcomes
  • Establish and develop links with relevant rare disease patient organisations to develop a patient partnership approach

Rare Disease Service Quality and Improvement
  • Commit to adopting a patient partnership approach to ensure patients and families with lived experience of rare diseases inform service developments
  • Develop relevant SOPs and guidelines as applicable to support the effective operation of the service
  • In collaboration with the Data Manager, develop and administer KPIs, outcome measures and a process for monitoring quality of care and measuring service impact and performance
  • Participate in clinical risk management where required and identify areas for improvement

GENERAL ACCOUNTABILITY:
  • 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:
  • Be a Health Care professional with a recognised professional qualification in Therapy or Nursing grade
  • Be entitled to be so registered on an appropriate professional register e.g. CORU, NMBI or other appropriate clinical/professional register.
  • Minimum of 5 years’ experience post qualification
  • Demonstrated experience of working in partnership with clinicians, patients and caregivers to improve care outcomes
  • Experience delivering quality improvement in a healthcare environment
  • Previous management experience
  • All candidates must demonstrate evidence of continuing professional development in the form of post-graduate qualifications or relevant courses.
  • Experience working in and leading a team in an acute hospital environment
  • Experience with Microsoft Office Suite, including Outlook and Excel

Desirable criteria:
  • Experience working in a rare disease or specialist care setting
  • Recognised postgraduate qualification relevant to role
  • Demonstrated achievement in the areas of clinical audit, quality improvement initiatives, practice development, teaching and research

REWARD & RECOGNITION:
  • Remuneration is in accordance with the Department of Health Consolidated Salary Scales, Effective from 1st March 2025 - €69,998-€81,228
  • The appointment is fulltime, permanent and pensionable
  • The annual leave entitlement is in line with the terms and condition of the relevant clinical grade of working days per year. The leave year runs from 1st April to the 31st of March each year
  • Normal working hours are in line with the relevant clinical grade worked over 5 days. 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

APPLICATION PROCESS:
Applications can be submitted ‘on-line’ at www.tuh.ie/careers by completing the application form and attaching your CV.  Candidates should be aware that, when applying for a post through the 'On-Line' Application System (Candidate Manager) they will receive an automated replying acknowledging receipt of their application.  Should you for any reason, not receive this automated acknowledgement, you should notify the Human Resources Department, before the closing date, otherwise your application will not be considered.

All candidates should note that, in order to maintain a timely process, the closing date and time for receipt of applications will be strictly adhered to.

Informal Enquiries to: Dr. Petya Mihaylova, Consultant Neurologist & Clinical Lead - Email petya.mihaylova@tuh.ie

Closing Date: Before close of business on 14th July 2025