Post by AZAFAROS B.V.
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To mark International GM1 Gangliosidosis Awareness Day, AZAFAROS B.V. is sharing the moving story of Maria Bacon from Wisconsin, mother to three children with juvenile GM1 gangliosidosis. The story describes how Maria and her husband Kevin navigated the diagnosis of their three GM1 boys, who are now 17, 9 and 3 years old, and how they manage their daily care: https://lnkd.in/e7-BC2cd It will be familiar to all other GM1 families who have received the devastating news that their child has a rare genetic Lysosomal Storage Disorder which they had never heard of. Often this diagnosis comes after years of worry, symptoms, and visits to doctors and specialists. The GM1 awareness day, organised annually by the Cure GM1 Foundation, highlights this year the importance of newborn screening for early diagnosis. We stand by this important campaign today to raise awareness of this rare genetic disease, as Azafaros investigates #nizubaglustat in #Phase3 studies in #GM1 and #GM2 and #NPC. #GM1day, #patientperspective, #HealthcareInnovation, #Biotech, #Impact, #GM1, #GM2, #NPC