We are excited to have created this GSD1b Patient Advocacy Organization to improve care, bring new therapies and treatments to GSD1b patients, and ultimately work towards developing a cure. Over the past 18 months we have worked closely with doctors, researchers, drug developers, policy makers and other rare disease organizations to get a better understanding of how we move the needle forward for GSD1b care and new treatments. One of the most glaring areas of need, and one that we as an organization can control, is the need to be more organized and have a better understanding of our patient population.
Rare-X is a collaborative platform for global data sharing and analysis to accelerate treatments for rare diseases.
We need all the GSD1b’s from all over the world to participate!
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