Patient Contact Registry

We have created a very simple 1-minute questionnaire using Google forms to help us capture some very basic demographics and contact information for adult patients and caregivers of pediatric patients. This data will not be shared with anyone and will give us a more effective way to communicate with the GSD1b community about events, research updates, etc. Please fill out this form today so you are counted and don’t miss out on anything!

Research Ready
Data Collection Plan

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.

Data Collection
Program w/ RARE-X

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!
Sign up Today!