Overview:Post Title:Rare Disease ERN ERKNET Care CoordinatorPost Status:PermanentDepartment:Transplantation Urology & NephrologyLocation:Beaumont Hospital, Dublin 9Reports to:Directorate Nurse Manager / Directorate Business ManagerSalary:Appointment will be made on Clinical Coordinator salary scale (€70,698 - €82,040) at a point in line with Government pay policy.Hours of work:Full-Time, 35 hours per weekClosing Date:Wednesday 1st October 2025 @ 12noonPlease note the hospital reserves the right to close the competition early should a substantial number of applications be received.Purpose of the roleThe Rare Disease ERN ERKNET 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.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.Reporting RelationshipThe Rare Disease ERN ERKNET Care Coordinator will report to the ERN ERKNET Clinical Lead/Co Lead on the rare disease programme of work and to the Directorate Nurse Manager or Directorate Business Manager of the supervising Directorate for operational supervision.Responsibilities:Patient Care Coordination Co-ordinate patients' care plans across cross-sectoral specialties and disciplinesEstablish and support the development of agreed rare disease referral pathways and processes across both acute and community-based settingsProvide specialist support, information and liaison services to patients/families and carersAssist in the effective transition from paediatric services to adult services as requiredParticipate in the development and implementation of rare disease care pathways in collaboration with patient organisations and multidisciplinary stakeholders, and the National Rare Diseases Office (as required)Actively participate in multidisciplinary team meetingsContribute to the development of clinical trials in rare kidney diseaseERN ERKNET Coordination and Support Support the Clinical Lead/Co Lead in the coordination of ERN ERKNET activitiesAssist the Clinical Lead/Co Lead in the referral process via the ERN ERKNET Clinical Patient Management System (CPMS), if requiredCollaborate with the team on the development and maintenance of a rare disease database and/or registrySupport the implementation of ORPHAcodes, the rare disease coding systemMaintain disease diagnosis on Renal data baseAssist in inherited kidney disease clinicContribute to development of undiagnosed registry as it applies to kidney diseaseParticipate in updating information on Orphanet (European rare disease information database) as relevant to the serviceAssist in the consenting of patients and families for rare disease registriesSupport the Clinical Lead/Co Lead in the annual ERN ERKNET audit/reporting processSupport the Clinical Lead/ Co Lead in the ERN ERKNET 5 yearly evaluation process (AMEQUIS) and compile relevant documentationEducation and Awareness Contribute to education and promote the awareness of rare diseases and the available treatments and resources with patients and families, healthcare professionals, and relevant external agenciesDevelop materials and mechanisms for educating referrers and community-based teams on matters relating to RD presentation, assessment and managementDevelop lecture series to educate patients on rare kidney diseasePsychosocial Support Identify how the service can offer practical and psychosocial support to build the capacity of patients and caregivers to improve quality of life outcomesEstablish and develop links with relevant rare disease patient organisations to develop a patient partnership approachQuality and Improvement Commit to adopting a patient partnership approach to ensure patients and families with lived experience of rare diseases inform service developmentsDevelop relevant SOPs and guidelines as applicable to support the effective operation of the serviceIn collaboration with the Data Manager, develop and administer KPIs, outcome measures and a process for monitoring quality of care and measuring service impact and performanceParticipate in clinical risk management where required and identify areas for improvementQualifications:Selection Criteria:Selection criteria outline the qualifications, skills, knowledge and/or experience that the successful candidate would need to demonstrate for successful discharge of the responsibilities of the post.Applications will be assessed on the basis of how well candidates satisfy these criteria.Mandatory:1. Statutory Registration, Professional Qualifications, Experience, etc(a) Candidates must at the latest date of application:(i) Be a Health Care professional with a recognised professional qualification inTherapy or Nursing gradeAND(ii) Be entitled to be so registered on an appropriate professional register e.g. CORU,NMBI or other appropriate clinical/professional registerOR(iii) Be eligible for membership )OR(iv) Health and social care therapy applicants who satisfy the conditions set out inSection 91 of the Health and Social Care Professionals Act 2005, (see note 1below*), must submit proof of application for registration with the RegistrationBoard at CORU. The acceptable proof is correspondence from the Health andSocial care Registration Board at CORU confirming their application forregistration as a Section 91 applicant.AND(v) All candidates must have 5 years full time (or equivalent) years post qualificationclinical experience of which 4 years full time are preferably in the falls and bonehealth speciality area, Older Persons services (or equivalent) and in a post withinthe healthcare service, which demonstrates evidence of a management/leadership role in a multidisciplinary/interdisciplinary team.AND(vi) Professional Development and Practice:All candidates must demonstrate evidence of continuing professionaldevelopment relevant in the falls and bone-health speciality area (Older PersonsServices) in the form of post-graduate qualifications or relevant courses.ANDAll candidates must demonstrate achievement in the areas of clinical audit, qualityimprovement initiatives, practice development, teaching and research.ANDAll candidates must demonstrate experience of interacting with multiple internaland external stakeholders as relevant to the role.(b) All candidates must have the requisite clinical, managerial and administrative knowledge andability (including a high standard of suitability and management ability) for the properdischarge of the responsibilities and duties of this role.2. Annual Registration(i) On appointment, practitioners must maintain annual registration on their professionalregister maintained by CORU or NMBI.AND(ii) Practitioners must confirm annual registration with CORU or NMBI to the HSE by wayof the annual Patient Safety Assurance Certificate (PSAC).3. HealthCandidates for and any person holding the office must be fully competent and capable ofundertaking the duties attached to the office and be in a state of health such as would indicate areasonable prospect of ability to render regular and efficient service.4. CharacterCandidates for and any person holding the office must be of good character.DesirableExperience working in a rare disease or specialist care settingRecognised postgraduate qualification relevant to roleIf an appointee has previously been employed in the Civil or Public Service and that appointee is entitled to or in receipt of a pension from the Civil or Public Service or where a Civil/ Public Service pension comes into payment during the appointee's re-employment that pension will be subject to abatement in accordance with Section 52 of the Public Service Pensions (Single Scheme and other Provisions) Act 2012.Please note: In applying for this position you are acknowledging that you understand that the abatement provisions, where relevant, will apply. It is not envisaged that the employing Department/ Office/ Body will support an application for an abatement waiver in respect of appointments to this positionFurther Information for CandidatesSupplementary information:The HospitalManagement Unit:Informal Enquiries ONLY to: (No applications will be accepted through these email addresses)Name:Jack O'Shea / Annette ButlerTitle:Business Manager / Directorate Nurse ManagerEmail address: /