Rare epilepsy community unites for change at CHIMES

For families navigating the complex world of rare monogenic epilepsies, the challenges are profound. Despite the devastating impacts of these diseases, our scientific understanding and ability to treat them effectively remains frustratingly limited. One primary obstacle to research is the inherent difficulty of studying “orphan diseases” that affect small populations, compounded by data isolated in institutional silos.
At Data for the Common Good, we’ve seen firsthand how breaking down these barriers can accelerate discovery. Our work with the Pediatric Cancer Data Commons has demonstrated the transformative power of collaborative data sharing for rare diagnoses. Now, with support from the Chan Zuckerberg Initiative, we have the opportunity to work with experts, advocates, and families in the rare epilepsy community to develop a similarly transformative approach for these difficult-to-study diseases.
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