Overview Garvan Institute of Medical Research is a global leader in biomedical research, enhancing human health through the study of genetic and genomic disorders. The Genomics of Rare Disease (GRD) Registry is Australia’s first participant-led registry for individuals with rare diseases, funded by a $1M Ramaciotti Biomedical Research Award. The Research Genetic Counsellor will be the primary point of contact for new participants, building and sustaining the recruitment pipeline that enables downstream sequencing, analysis, diagnosis and clinical trial opportunities. Responsibilities Drive participant recruitment through clinical networks, patient advocacy groups, social media, events and direct outreach; identify families who could benefit from the registry. Develop and maintain referral pathways with clinicians, genetics services, pathology providers and advocacy organisations. Track recruitment progress against targets and adapt strategies to maximise enrolment, including outreach to under-represented ancestral and geographic communities. Lead consent and enrolment, guiding participants and families through the informed consent process covering genomics, whole-genome sequencing, biospecimen collection, data sharing, recontact and incidental findings. Ensure all consent documentation is current, complete and compliant with HREC requirements. Coordinate the logistics of saliva and blood sample collection across Australia, manage kit distribution, scheduling with pathology providers, shipping to biobanks and troubleshooting barriers to maximise sample return rates. Maintain participant records, ensure data quality and completeness, and support ongoing engagement, retention and recontact for future research opportunities. Represent the GRD Registry at patient advocacy events, rare disease conferences and community forums, and contribute to participant-facing communication materials, including translations into Mandarin, Arabic, Vietnamese and Punjabi. Support return of clinically relevant genomic findings and recontact of participants for subsequent studies and clinical trials. Identify, assess and report operational, financial and safety risks; adhere to the organisation’s Risk Management Framework and workplace policies. Essential Criteria Degree in genetic counselling or an equivalent qualification in a relevant health or clinical science discipline. Experience in participant or patient-facing roles such as genetic counselling, clinical research coordination or clinical trials. Strong interpersonal and communication skills; ability to build rapport with patients, families, clinicians and advocacy groups. Experience with informed consent processes in genomic or biobank research. Experience in genetic variant interpretation or a strong willingness to learn. Ability to work independently, manage logistics across multiple participants and sites, and meet recruitment targets. Familiarity with research ethics, HREC processes and participant privacy requirements. Desirable Criteria Experience working with rare disease communities or patient advocacy organisations. Experience with participant engagement platforms, clinical databases and biobank systems (e.g., REDCap, LIMS). Proficiency in a language other than English (e.g., Mandarin, Arabic, Vietnamese, Punjabi). Interest in genomic research and application of new technologies to rare disease diagnosis. Key Personal Attributes People-oriented: genuine interest in working with families affected by rare genetic conditions, with empathy and patience. Proactive: identifies recruitment opportunities and acts without waiting to be directed. Initiative: comfortable with outreach to clinicians, advocacy groups and potential participants. Organised: manages logistics across multiple participants, collection sites and timelines without errors. Collaborative: works effectively across multidisciplinary teams spanning clinical, research and operational functions. Adaptable: comfortable working part‑time across a nationally distributed project with evolving priorities. Benefits Salary: $85000 per annum (prorated: $17000) + 14% super + salary packaging. Flexible work arrangements and 18weeks paid parental leave for both parents (including superannuation). Ample opportunities for ongoing training and development within a diverse, highly international research environment. Generous salary packaging to boost take‑home pay (up to $15900 general expenses + $2650 meals/accommodation). Discounted health insurance and lifestyle discounts with community partners. A range of additional leave types: cultural leave, conference leave, community service and study leave. About Garvan Garvan Institute of Medical Research is an independent Medical Research Institute based in Sydney, delivering scientific and clinical impact on a global basis. It is committed to the principles of equity, diversity, inclusion and belonging and encourages culturally diverse teams to advance scientific discovery and improve health outcomes. #J-18808-Ljbffr