This session discusses the differences in anxiety and depression among those living with rare diseases, looks closely at the recent study exploring the impact of COVID-19 on the quality of life of the DM community, and identifies successful coping and resilience strategies found among people with rare disease, especially during times of isolation and social distance.
Presented during the Community's Choice Track at the MDF 2020 Virtual Conference.
About the presenters:
Katy Eichinger, PT, PhD, DPT, NCS
Dr. Eichinger is a physical therapist and assistant professor at the University of Rochester, where she is involved in the clinical care of individuals with adult and pediatric neuromuscular conditions. She is involved in natural history studies and clinical trials involving patients with myotonic dystrophy and other neuromuscular diseases.
Kathleen Bogart, PhD
Kathleen Bogart, PhD is an Associate Professor of Psychology at Oregon State University. As a person with a rare disorder, she is passionate about researching, educating, advocating about quality of life with rare disorders. She has served on the American Psychological Association Committee on Disability Issues in Psychology, the Rehabilitation Psychology editorial board, and the Moebius Syndrome Foundation Scientific Advisory Board. Her work has been featured in the New York Times, Time, The Conversation, the Financial Times, and Psychology Today. Dr. Bogart presents internationally to academic, general, and stakeholder audiences about rare disorder awareness.