We are a 501(c)(3) nonprofit dedicated to families affected by CSNK2B Neurodevelopmental Syndrome (also known as Poirier-Bienvenu Neurodevelopmental Syndrome / POBINDS, OMIM #618732)—a rare genetic disorder first identified in 2017 and often associated with early-onset seizures, hypotonia, developmental delay, and speech impairment.

Our mission is to raise awareness and provide education about CSNK2B Neurodevelopmental Syndrome and to enrich the lives of those affected by accelerating research and treatments and by pursuing a cure for CSNK2B.

What we do:

->Build community and connect families to resources and one another

->Advance research by helping families stay informed about studies and opportunities to participate

->Raise awareness so more clinicians, researchers, and supporters recognize CSNK2B/POBINDS

->Collaborate with rare disease and research networks to accelerate progress

Get involved:
If you’re newly diagnosed or have been on this journey for years, we invite you to connect with our community, stay updated on research and treatment advancements, and help move the field forward.

CSNK2B Foundation

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