News & Media

2022 Review Highlights

GSD1b Data Collection Platform – Went live with GSD1b’s first and only Online Patient Registry in partnership with Rare-X and Global Genes. Global Genes –

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jamas-picking-up-sophie-2023-boston-marathon (1)

Running to #CureGSD1b!

Congrats to Jamas for completing the 2023 Boston Marathon Congrats to Sophie’s Dad, Jamas LaFreniere for completing the marathon in 4:29 and raising $53,000! Thank

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