CREDITS
Rachel Grob, PhD, MA
Rachel Grob, PhD, MA is Principal Investigator on this project. She obtained funding, conducted interviews, co-led the analysis, and disseminated research findings. Rachel is a distinguished scientist and the director of the Qualitative and Health Experiences Research Lab. Her work focuses on improving health by listening to people’s experiences with health and health care, synthesizing their narratives, and then using this powerful learning as a source for making concrete changes that benefit people, families, clinicians and communities.
Emily Hammad Mrig, PhD MA
Emily Hammad Mrig, PhD MA is a Co-Principal Investigator on this project. As a co-leader, she conducted interviews, participated in data analysis, and disseminated research findings. Dr. Mrig is an Assistant Professor in the Department of Clinical Pharmacy and at the Center for Translational and Policy Research on Precision Medicine (TRANSPERS) at the University of California, San Francisco. Her work investigates inequities in healthcare access, particularly in precision medicine, cancer, and undiagnosed conditions.
April Hall, PhD, MS, CGC
April Hall, PhD, MS, CGC is a Genetic Counselor and Researcher in the University of Wisconsin – Madison, Undiagnosed Disease Program and served as the clinician for this project. Dr. Hall is an Assistant Professor in the Department of Pediatrics, division of genetics and metabolism and the Associate Director of Research for the Masters of Genetic Counseling Studies Program at the University of Wisconsin – Madison.
Kelly Novak, APSW
Kelly Novak, APSW is a Research Specialist in the Department of Family Medicine and Community Health at the University of Wisconsin–Madison. She serves as a research coordinator for studies focused on rare diseases, working closely with interdisciplinary teams to support data collection and project logistics. She particularly enjoys communicating with patients and families about the research process, building trust, and helping them navigate participation in qualitative studies. She received her Master of Social Work from the University of Wisconsin–Madison.
Emily Warne
Emily Warne served as a co-investigator and provided oversight of coordination on this project, participating in many aspects of the work. She is the Program Manager for the Qualitative and Health Experiences Research Lab at the Department of Family Medicine and Community Health at the University of Wisconsin-Madison.\
Acknowledgements
Special thanks to the 20 individuals who shared their stories for this project.
Funders
This project was supported by a grant from the Center of Precision Medicine at the University of Wisconsin-Madison (Grob, PI) and the University of California-San Francisco, through the National Human Genome Research Institute (NHGRI), National Institutes of Health (NIH) under grants K01-HG013687 (Mrig, PI) and R01-HG011792 NIH-NHGRI (Phillips, PI).