In November, BDSRA staff joined global Batten research and clinical partners of the DEM-CHILD Batten Disease Registry in Hamburg, Germany. It was an exceptional two full days of meetings to discuss how data from around the world can and has helped to inform clinical trials, treatments, quality of life of patients and more. BDSRA, along with funding partners Noah's Hope/Hope 4 Bridget, have helped make significant advances in the registry and what is known globally about Batten disease.
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