Supported Research

Psychosocial Experiences of Adults with Fanconi Anemia: A Participatory Mixed-Methods Research Study

2022 | University of Minnesota, Oregon State University |

Amount Funded: $98,495

This project aims to partner with members of the Fanconi anemia community to design a first-of-its-kind quality of life study, considering the physical, mental, emotional, and spiritual aspects of living with FA, as well as issues of diversity, equity, and inclusivity. Results of this study will help FARF and clinicians around the world develop ways to improve the mental health of those living with FA. By engaging members of the FA community in the planning, recruiting, and analyzing phases of the project, researchers will be sure to assess the most meaningful modifiers of quality of life for this community.

Researchers: Megan Voss, Kathleen Bogart