Rare Disease Patient & Family Logistics & Experience Officer (PT 0.5 FTE)

CLOSING DATE 25th Aug 25

This is an exciting opportunity for an experienced, highly motivated individual to join our vibrant, multidisciplinary rare disease research team. The post-holder will focus on mapping how people affected by rare diseases engage in clinical research both locally and internationally. They will seek and share information, communicating with a broad range of stakeholders to promote and support participation in rare disease research. They will be a primary point of contact for patients and families participating in clinical trials, developing material that supports their trial journey. In collaboration with senior colleagues, you will highlight strategic projects within a diverse portfolio, supporting a collaborative research environment that fosters a culture of trust and mutual respect between all those engaged in research. The role requires excellent interpersonal skills.

This role provides a rare opportunity to work in partnership with patients and families living with rare disease(s), academic and clinical colleagues, professional support teams, community groups, industrial collaborators.

The post-holder will be based at the Centre for Public Health at Queen’s University Belfast. 

Rare Disease Patient & Family Logistics & Experience Officer (PT 0.5 FTE)