Supported Research
Psychosocial Experiences of Adults with Fanconi Anemia: A Participatory Mixed-Methods Research Study
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: Kathleen Bogart , Megan Voss