Data collection update This year STAR has placed a renewed emphasis on data collection and having a better understanding the demographics of our STAR community. There are approximately 250 known cases of Salla disease worldwide, but that number is likely to grow due to better awareness of the disease and genetic testing sites like 23 and Me, which tests for the SLC17A5 variants. At the October meeting, Jessica shared that she has heard from new STAR families after they received test results from 23 and Me indicating the presence of the Salla gene (or carrier), and a STAR family member on the call shared her experience finally receiving a diagnosis for her adult daughter. As our community grows and we hopefully move closer to therapies, at the recommendation of both the STAR SAB and FSASD Consortium clinicians, STAR will re-start a patient registry in 2024. MORE DETAILS ARE COMING SOON! At the October Consortium Meeting, STAR Data Manager shared some facts about the 77 Salla patient partners that are part of the STAR family: By country: NOVEMBER 2023 PG 10