Research Project Manager (Maternity Cover)Rare Diseases Ireland is currently recruiting for a Research Project Manager(Maternity Cover).RoleRare Diseases Ireland (RDI) has an exciting opportunity for a highly motivated and organised individual capable of working under their own initiative to take on a 12-month fixed-term maternity cover position as Research Project Manager at RDI.The role involves working closely with the Chief Executive and Board of Rare Diseases Ireland to deliver research priorities for RDI aligned to the Health Research Board funded Rare Disease Catalyst (RDCat) consortium, a group made up of people living with rare diseases, healthcare professionals and researchers. The overall objective is to establish and build a rare disease research ecosystem and infrastructure in Ireland with the lived experience of people living with rare diseases and their family members as the central core component of the ecosystem. The successful candidate will work closely with RDCat consortium members and in particular the research team at UCD to:1) partner with clinicians across European Reference Network (ERN) sites in Ireland to set up, recruit people to and analyse and publish resultant data for a research study testing a new Rare Disease Patient Reported Experience Measures (PREM) questionnaire tool to objectively measure the lived experience of healthcare services in Ireland;2) collaborate with the team in UCD to analyse and publish case studies on the potential use of Patient Reported Outcome (PRO) measures in decision making around reimbursement in Ireland for medicines for rare diseases;3) Manage an Irish Patient Advocacy Group (IPAG) across rare diseases to mirror the established structure of the 24 ERNs that will act as a resource for identifying rare disease research priorities in Ireland, bring ERN research opportunities to Ireland and share best practice on ERN activities and integration into the wider Irish healthcare ecosystem.Responsibilities include:· Manage on a day-to-day basis the research activities at RDI.· Work with RDCat Consortium members and in particular UCD research team to ensure that objectives of RDCat consortium are achieved: amend ethics submissions, data protection impact assessments, recruit participants, engage with existing and future registries, collect and analyse data, prepare and disseminate research outputs.· Conduct interviews with stakeholders examining the utility of PROs in national reimbursement decision making processes, conduct data analysis and write up.· Lead operation of an Irish Patient Advocacy Group (IPAG) for people living with rare diseases, including development of Terms of Reference, coordination and minuting regular (approx. quarterly) meetings of IPAG members and follow-up on relevant actions.· Work with Irish rare disease patient organisations and advocates and healthcare professionals to support and deliver research objectives.· Ensure best practice governance around all aspects of the research process.· Work as part of the UCD and RDI research program under the supervision and direction of work package leads and the principal investigator.· Attend RDCat meetings and other meetings as required with follow up and reporting back to RDI CEO.· Present and report to RDI Board on RDCat activities.· Prepare reports, as required, to demonstrate RDCat project delivery for funders.· Participate in initiatives to increase patient diversity, influence, and involvement in rare disease research nationally and internationally.· Build and sustain relationships with national and international research stakeholders including patient networks, academic and clinical researchers, research funders and other relevant stakeholders.· Act as RDI point of contact for advocates and patient organisations, academic and clinical researchers, research funders and other relevant stakeholders with an interest in rare disease research in Ireland.· Work with all stakeholders to ensure patient impact and visibility from research.· Maintain and update RDI research webpages.· Manage and monitor RDI research email and deal with research communications as appropriate.· Assist in advocacy relating to health research and ensuring that people living with rare diseases are central to research.· Assist lobbying and advocacy campaigns relevant to rare disease research in conjunction with RDCat consortium members.Qualifications:· An undergraduate degree in health sciences or a related area is required.· A postgraduate degree (Masters/MD and/or PhD) in a related area desirableRequired knowledge and experience:· Minimum 3 years previous work experience (or equivalent) in a related field, for example health and/or social care research, health and/or social care management, patient advocacy, etc.· A track record of developing and executing projects from initiation through to completion and close-out, including delivery of varied project objectives with interdependencies across project activities.· A track record of effective networking and building strong working relationships within and across organisations, disciplines and professions, and across all levels of seniority.· A track record of analysing research outputs and preparing results for publication.· Demonstrable oral, written and presentation communication skills.· Organisational and administrative skills including a proven ability to work to deadlines.Desirable knowledge and experience:· Understanding rare disease healthcare policy, systems and service delivery environment in Ireland.· Understanding rare disease research environment in Ireland and internationally.· Knowledge of Irish and European research funding opportunities.Skills & Competencies:· Strong leadership and influencing skills, both internal and external to the organisation and across all levels of seniority.· Excellent facilitation, organisational and interpersonal skills. · Excellent communication skills (oral, written and presentation) - with a high level of initiative, tact, diplomacy and confidentiality.· Self-starter with the ability to work as part of a team.· Cordial, tolerant and willing to help others, co-operative and patient; shares work and information; establishes rapport, can influence and develop effective networks.· Conscientious: Have a pro-active approach to work, anticipating and resolving problems in advance; have keen attention to detail - from anticipating and addressing issues in advance to understanding requests and delivering quality work with minimal errors.· Flexibility: Can operate flexibly within a busy environment; can shift focus when required.· Motivated: Display a 'can-do' attitude, be committed to RDI and its development; demonstrate enthusiasm and passion for the role.· Project Management Skills: Ability to ensure that project plans are communicated and that all timelines are met.· I.T. skills: Knowledge of MS Office suite.Other· This role is subject to Garda vettingReporting structure:· This role reports to the Chief Executive Officer of RDIWorking from home:· RDI does not have a physical office. Staff conduct business primarily through email, telephone calls and online meetings. Laptop will be supplied.· RDI normally holds a number of in-person Board, Round Table of Companies and member meetings during the year. These and other meetings take place in Dublin approximately once every 2-3 months.Terms & conditions:· This role is part-time (3 days/week) and fixed purpose and duration (12 months).· Flexibility to undertake some travel and occasional work outside standard hours is a requirement.· You must have permission to live and work in Ireland.Salary:· Annual salary €55,000, paid pro-rata.Application process:· Please send your cover letter and CV combined into a single PDF document to:with the subject line Research Project Manager role.· Please outline in your CV or cover letter how you meet the required and desirable skills.· This is a rolling recruitment process. Interviews may be scheduled in advance of the closing date. Early application is recommended.· Closing date: January 11th, 2026 @11pm.About Rare Diseases IrelandRare Diseases Ireland (RDI) is the national alliance for rare disease patient organisations in Ireland, working across all rare diseases to improve the lives of the estimated 300,000 people living with rare diseases in Ireland.We advocate for, empower and engage organisations and advocates, as well as people living with rare diseases, their carers and their families, to mobilise together with a strong voice to shape policies and solutions driven by the needs of people living with rare diseases.Our vision is a country where all people living with rare diseases live longer and better lives, reaching their full potential, and are included in a society that leaves no one behind. This means we want equity for people living with rare diseases in Ireland – equitable access to diagnosis, treatment, health and social care and opportunity.