curegsd1b

GSD1b Patient
Registry Coming Soon!

CUREGSD1b

Our Mission

We are a group of passionate parents working to create a global organization to support GSD1b patients and caregivers. We also have the support of some amazing doctors and scientists. Our mission is to improve the lives of patients with GSD1b today, while advocating and assisting in developing a cure in the future.

Who We Are

Welcome to the CureGSD1b Alliance. We are a non-profit organization dedicated to helping find better treatment and ultimately a cure for Glycogen Storage Disease Type 1b. The goal of this organization is to help provide guidance and bring collaboration to all people and organizations working to cure GSD1b. This organization was born from two fathers working together to help cure their children. Although we had two separate foundations, we quickly learned how important it was to work together and how much more effective and efficient we were. We are hoping we can inspire more folks to join this fight to cure our children. Please don’t hesitate to reach out with any questions. All fundraising will be done by individual organizations that are Alliance members and all grant requests will go through them as well. The CureGSD1b website is funded and operated by Sophie’s Hope Foundation, which is a registered 501c3 charity dedicated to improving the lives of patients with GSD1b (Tax ID: 84-5014314).

GSD1b Research Plan

The CureGSD1b Research Alliance is working extensively on a full understanding of the research landscape related to GSD1b at the moment. Our focus will be to determine the current landscape and formulate a plan with leading doctors, researchers, and drug companies to help move the needle for GSD1b patients. Our focus will be on the outcomes that we desire as GSD1b parents and patients, and what research will support those goals. We are planning to blend a combination of short term goals to make improvements in GSD1b patients’ lives now, with an eye on the long term goal to cure GSD1b. As we begin to support individual projects we will provide more updates.

Emergency Letter

Please use this link to create a customized emergency letter for GSD1b in several languages. It is always critical for GSD1b patients to have this on hand. Thank you to Dr. Derks and team for their work in creating this.

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reach out with any questions.

GSD1b Research Alliance Members:

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