GSD1b Data Collection program w/ RARE-X Launch
Sophie's Hope Foundation
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GSD1b Data Collection program w/ RARE-X Launch
84 просмотра · 4 г. назад
Sophie's Hope Foundation
79 подписчиков
84 просмотра · 4 г. назад
This is a video introducing the GSD1b Data Collection Program powered by RARE-X. Learn a little about why we need the GSD1b community to participate, about the platform, and some tips and tricks for users. This is GSD1b's one and only online registry and this will be a foundational piece on our path to new new therapies and a cure.