Data Collection Program w/ RARE-X

Rare-X is a collaborative platform for global data sharing and analysis to accelerate treatments for rare diseases.  Please click on the link to go to our GSD1b portal with Rare-X.  Once there, create an account and get started.  It may be helpful to watch the webinar below before starting.  It is critical for GSD1b that we get our data online and make it accessible to researchers for these very important reasons:

  1. Attract new research and researchers by making our data easy to find and study
  2. Provide existing researchers and drug developers easy access to relevant and up to date data
  3. Prepare ourselves for future clinical trials
Watch our Kickoff video w/ RARE-X Watch Video:

Cheat Sheet and FAQ.
This will be helpful when filling out surveys.
Click Here for Cheat Sheet