NEWS FROM OUR CLINICAL PARTNERS The FSASD Consortium conducted their 15th meeting in March 2024, and will meet again this f month. The Consortium is now 55 members strong, representing 20 global Centers (USA, Germany, Finland, UK and France). Members have all signed a non-disclosure agreement and are freely sharing knowledge, data and resources on the path to therapies. OPERATION IDD GENE TEAM The Consortium was well represented at the 2024 In March, Consortium members WORLD Symposium in San Diego by the following Stephen Walkley and Melissa members: Wasserstein and team published their Marya Sabir (talk): Advancing free sialic acid storage work on the ‘Operation IDD Gene (FSASD) disorder disease modeling: Insights from iPSC- Team’ at the Albert Einstein College of derived neural cell types Medicine. “Using team-based Mahin Hossain (poster): Investigating the role of SLC17A5 precision medicine to advance in myelination and neurodegeneration in a murine model of understanding of rare genetic brain Free Sialic Acid Storage Disorder disorders” outlines their work bringing Marjan Huizing (poster): Cell-based functional assays for families affected by rare genetic Free Sialic Acid Storage Disorder diseases that cause intellectual and developmental disability together with Meeting details are published here, for those with journal physicians and scientists. The access: partnership described in the paper https://www.sciencedirect.com/journal/molecular- ultimately led to the creation of STAR! genetics-and-metabolism/vol/141/issue/ This open access article is available to Are you a clinician or researcher interested in all here: learning more about the Consortium? Sign up here: https://jneurodevdisorders.biomedcen https://www.star-foundation.io/get- tral.com/articles/10.1186/s11689-024- involved#Researcher 09518-z www.sallaresearch.org Page 5 of 8