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.
Families – you can stay up-to-date on our weekly RARE-X challenges and raffle drawings on both the Ogden Syndrome-NAA10 Family Support Group and the NAA10 Families Together pages on Facebook.
Ogden Families – you’re invited to the RARE-X ENROLLMENT PARTY!
“Global Genes and RARE-X have come together around a shared vision of empowering the next generation of advocates to drive progress within and across rare diseases. The combined organization will provide rare disease advocates with a continuum of services, resources, and connections to accelerate the path from initial support and awareness through diagnosis, drug development, and access to treatments, using a collaborative approach that involves biopharma, clinicians, researchers, and funders, with data as a central core” (shared vision statement provided by Global Genes and RARE-X).
If you’re not familiar with Global Genes, check them out! They are an amazing resource for the rare disease community.