Accelerate STXBP1 Disorders Research By Completing Your Surveys in the Xcelerate RARE Challenge

Help us speed the cure for STXBP1 disorders by sharing your patient information with a HUGE pool of researchers in this new global scientific challenge. This is your chance to personally fast forward the search for a cure and get our rare disease in front of thousands of researchers and data scientists around the world very quickly.

The competition among the researchers launches this spring so we need your help now to get as many of our STXBP1 community enrolled and surveys completed in RARE-X by February 28. All the surveys are short and it’s easy to check them off right from your patient’s dashboard.

The STXBP1 Foundation is really excited to be participating in Xcelerate RARE: A Rare Disease Open Science Data Challenge because it is a new and innovative way to get our patient data out to the best people faster. The contest is only for rare neurodevelopmental disorders, like STXBP1, and it brings together researchers and data scientists from different fields and expertise in a collaborative and competitive environment to make the best use of our data in their studies. And don’t worry, all the STXBP1 patient-provided info is de-identified from the RARE-X data collection platform and taken right from the surveys you complete. 

The more surveys we offer up in the competition, the more STXBP1 disorders will get noticed … and the greater the chance of attracting more research to our cause to find a cure.

Learn more about RARE-X and find a link to your dashboard on the STXBP1 site here.

Learn about the Open Science Data Challenge on the RARE-X site here. And you can read even more about the challenge and listen to a podcast about the competition here.

Send any questions to us via email here.

Jackie Steinberg