Our friends at RARE-X are launching an innovative and exciting program later this year called Xcelerate RARE! According to RARE-X, “The Xcelerate RARE: A Rare Disease Open Science Data Challenge is bringing together researchers and data scientists in a collaborative and competitive environment to make the best use of patient-provided data to solve big unknowns in healthcare. The Challenge will launch to researchers in late May 2023, focused on rare pediatric neurodevelopmental diseases” (https://rare-x.org/open-science-data-challenge/).
What does this mean for Ogden CARES and our patient community? We’ve got some work to do! We need to collect as much data as possible to make Ogden Syndrome a prime candidate for this research opportunity.