In this talk, I will present two empirical studies conducted in partnership with the disability community. Both studies present an in depth needs assessment to be used as a foundation for creating informatics tools responsive to the disability community’s needs. In the context of these studies, we have employed a range of methods including interviews, focus groups, task analysis, participatory design sessions, and usability testing. In the first study, supported by the Agency for Healthcare Research and Quality, we engaged with adults living with physical, cognitive, sensory, and mental health related disabilities to understand how best to design informatics tools supporting communication of health information among disabled adults and members of their social networks. In the second study, funded by the National Institutes of Health, we engaged with parents of children with medical complexity to understand the need for informatics tools that support communication and coordination with the child’s caregiving network. At the conclusion of this talk, I will present a framework which synthesizes lessons learned about engaging in informatics research with the disability community across these and other empirical studies conducted by our team.