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FA: Impacts of Quality of Life and Mental Health

This session discusses common mental health challenges faced by adults living with FA, recommendations for advocating for mental health needs with primary care teams, and strategies for improving mental health. Researchers also describe the Psychosocial Experiences of Adults with Fanconi Anemia (FA) Study that opened for enrollment in fall 2022.

Speaker Bios:

Megan Voss holds a doctorate of nursing practice with experience in the speciality areas of oncology, integrative health, and mental health care. She has been working with adolescents and young adults with a diagnosis of Fanconi Anemia at the University of Minnesota since 2014. And her research focuses on better understanding the incidence of mental illness in the FA community and other factors that impact quality of life.

Kathleen Bogart, PhD is an associate professor of psychology at Oregon State University. She studies mental health in people with rare disorders, including Fanconi Anemia, and has a rare disorder herself. An advocate for people with rare disorders and disabilities, she serves on several boards including the American Psychological Association Committee on Disability Issues in Psychology and the Moebius Syndrome Foundation Scientific Advisory Board.