CureGSD1b is a group of parent advocates and scientific advisors working together to bring awareness, better treatment, and ultimately a cure to all patients with Glycogen Storage Disease Type 1b. The organization was started in 2020 by the parents of Sophie, who had recently been diagnosed with GSD1b in the fall of 2019. She inspired her parents to create the Sophie’s Hope Foundation, which later led to the formation of the CureGSD1b Research Alliance. Our goal is to create a global network of GSD1b patients, advocates, doctors, and researchers to help patients today, while pushing towards a cure in the future.
Here is a list of conditions this partner raises awareness and advocacy for:
In January of this year, a University of Connecticut (UConn) team administered the world’s first infusion of a new gene therapy as part of a
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