Patient Engagement and Project Lead

The Citrin Foundation is a dynamic, forward-thinking organisation focused on pioneering innovative research and supporting patients with citrin deficiency. We fund research projects to better understand the condition and develop new therapies. We also provide support to citrin deficiency patients and their families globally. By collaborating with leading institutions, clinicians, and researchers worldwide, we aim to drive impactful change through our research efforts, clinical programs, patient engagement, and advocacy efforts. As we continue to grow, we are seeking a highly skilled and motivated Patient Engagement and Project Lead to play a key role in managing and driving forward our various initiatives. You will be able to find out more about us on our website here: https://citrinfoundation.org Role Summary The Patient Engagement and Project Lead is a senior role within the Foundation and oversees the strategic development and delivery of patient engagement and project activities. The postholder will help guide organisational priorities and ensure that patient needs, research evidence, and clinical insight drive the Foundation’s mission. The postholder will lead major patient-facing initiatives. They will develop and manage patient registries, coordinate patient involvement in clinical studies and collaborative research programmes and produce high-quality research outputs suitable for publication. The postholder plays a key role in strengthening relationships with the clinical community, raising awareness of citrin deficiency, and building impactful collaborations with other patient advocacy groups. This position requires excellent communication skills, strong project leadership, advanced research capability, and the ability to work confidently with clinicians, academics, patient groups, and other team members. Key Responsibilities 1. Patient engagement and support * Set the strategic direction for patient engagement across the Foundation’s programs with other members of the Senior Management Team. * Lead the design, delivery, and evaluation of patient engagement initiatives. * Ensure patient experience and lived expertise inform program development and organisational priorities. * Expand the Foundation’s global patient community and deepen engagement. * Develop accessible, high-quality patient information, communication channels, and support structures. * Serve as a senior escalation point for complex or sensitive patient needs. * Ensure compassionate, timely, and accurate communication with patients and families. * Develop initiatives that empower patients, improve health literacy, and enhance their participation in research and community programmes. * Gather patient insights systematically to inform program improvements and clinical priorities. * Lead patient recruitment, coordination and operational delivery of the Foundation’s clinical research initiatives. * Lead coordination on multi-centre or multi-national research collaborations. * Maintain strong and effective relationships with patients, clinicians, investigators, and specialist centres. * Ensure compliance with research governance, ethical standards, and best practices. * Lead the strategic design and development of patient registries. * Establish data collection, quality assurance, and secure data management systems that are compliant with ethical and international standards. * Strategic data analyses to identify trends, unmet needs, and research opportunities. * Data-driven insights to guide program strategy, clinical awareness initiatives, and research outputs. * Conduct research using quantitative, qualitative, or mixed-method approaches. * Lead data analysis, interpretation, and synthesis for scientific and programmatic use. * Produce high-quality research outputs, contributing to peer-reviewed publications, reports, and abstracts. 3. Strategic External Engagements * Build and maintain relationships with clinicians, dietitians, and healthcare professionals. * Develop and deliver educational materials, presentations, and outreach activities aimed at improving clinical awareness of citrin deficiency. * Support efforts to improve diagnosis and management by engaging relevant clinical networks. * Build partnerships with other patient advocacy organisations, relevant charities, and community groups for rare diseases. * Develop joint projects, events, and campaigns that enhance awareness, support, and impact. * Represent the Foundation in collaborative initiatives and shared advocacy efforts. 4. Management and Leadership * Lead multiple concurrent programs from planning through evaluation. * Develop project plans, risk assessments, monitoring frameworks, and performance indicators. * Coordinate communication and collaboration across internal teams and external partners. * Ensure high-quality delivery and continuous improvement across all programme areas. * Provide supervision and guidance for other team members, supporting their professional development and building capacity within the team. * Set clear expectations and ensure consistent delivery across patient engagement and research activities. * Work closely with the President and SMT colleagues to align program areas with organisational strategy. * Provide evidence-based recommendations for organisational planning and decision-making. Skills & Experience Required * Master’s degree or higher in a life science, health, public health, epidemiology, or related field. * At least 7–10 years of experience in patient engagement, clinical research, health research, or related program leadership. * Demonstrated experience working with patient communities and understanding their needs. * Proven ability to plan and deliver clinical research projects or collaborative studies. * Experience analysing data and producing scientific outputs. * Strong project leadership and organisational skills, ability to manage multiple programs. * Excellent communication and interpersonal skills. Comfortable working across diverse cultures, with patients, clinicians, researchers, and senior management. * Experience supervising and mentoring junior team members. * Experience in rare diseases, metabolic conditions, or patient advocacy. * Established track record of peer-reviewed publications or conference presentations. * Experience working in a charity, foundation, or multi-stakeholder environment. Personal Attributes * Patient-centred, empathetic, and committed to improving outcomes. * Strategic thinker with strong problem-solving ability. * Confident engaging with patients, clinical, scientific, and other stakeholders. * Collaborative and diplomatic, with excellent relationship-building skills. * Highly organised, adaptable, and able to manage competing priorities. * Professional, discreet, and able to represent the Foundation with credibility. J-18808-Ljbffr