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The UGDH Foundation has awarded a $40,000 research grant to fund the first knock-in mouse model of Jamuar syndrome! Dr. Gaia Colasante of the University Vita-Salute San Raffaele-Milan, Italy, in collaboration with Dr. Emanuela Bottani of the University of Verona, will direct this project, known as “Generation and characterization of a knock-in model of Jamuar syndrome.” Dr. Colasante has already successfully developed a mouse model for Dravet syndrome, another profound form

World class clinicians and scientists as well as dedicated family and friends of patients with Jamuar syndrome will converge for presentations on • clinical features and genetics of Jamuar syndrome/UGDH-related disorder • relevant therapeutic approaches • state of natural history collection • updates from recent research and more! Day 1 on Thursday, May 21, will focus on the patient experience and clinical trial readiness. Day 2 on Friday, May 22, will focus on the latest res