Gina Szajnuk to Replace Dr. Lorenzo Botta as RDAC Chair

Utah’s Rare Disease Advisory Council (RDAC), administered by BioUtah, in conjunction with the Utah Department of Health and Human Services, met on July 15 to conduct business and transition to a new leadership team. Stepping down as RDAC Chair after four years of exemplary service is Lorenzo Botto, MD. Botto has long served the rare and undiagnosed patient community as a physician in the University of Utah’s Health System. Gina Szajnuk, current vice-chair, moves up to chair. Szajnuk, an undiagnosed patient along with her three children, has been an advocate for years and continues to serve as the executive director of the Rare and Undiagnosed Network, or RUN, which she founded.

The RDAC elected Sylvia Lam as the new vice-chair. Lam heads up the United Angels organization and has been instrumental in building the RDAC’s outreach strategies. Matt Pearl was elected secretary. Pearl is a rare disease patient who also serves in various capacities for several nonprofits, including the National Ability Center in Park City, Utah. He will replace Gholson Lyon, MD, who served as secretary through the end of 2025.

The RDAC is charged to be an advisory board for the Utah legislature and the Department of Health and Human Services regarding rare disease considerations.