Hope. Community. Collaboration. Understanding. Cure.

CSNK2A1 Foundation is focused on finding a cure for Okur-Chung Neurodevelopmental Syndrome and ensuring affected individuals have the opportunities and supports necessary for happy and full lives.

Newly Diagnosed

Okur-Chung Neurodevelopmental Syndrome is a rare genetic syndrome first identified in 2016.

OCNDS is caused by a mutation in the CSNK2A1 gene which is located on Chromosome 20. The gene CSNK2A1 creates a protein called CK2 which plays a crucial role in development. A mutation in this gene disrupts typical development.

Everyone with OCNDS has some degree of developmental delay and/or differences in brain function
More than 300 patients worldwide have been diagnosed with OCNDS so far. This number is expected to increase with increasing utilization of WES in other regions of the world
OCNDS is caused by heterozygous mutations in the CSNK2A1 gene on chromosome 20
OCNDS affects both males and females
OCNDS is estimated to have an incidence of 1 in 100,000 meaning that for every 100,000 babies born, 1 will have OCNDS. This data is derived from a publication extrapolating the relative incidence of rare diseases vs. others with known incidence (ncbi.nlm.nih.gov/pmc/articles/PMC9687899). The data for the CSNK2A1 gene is located in the supplemental tables
There is not a definitive cure for OCNDS yet
Find answers to common questions asked by OCNDS families here
Review our Clinician one-pager for quick facts about OCNDS

Everyone with OCNDS has some degree of developmental delay and/or differences in brain function
More than 300 patients worldwide have been diagnosed with OCNDS so far. This number is expected to increase with increasing utilization of WES in other regions of the world
OCNDS is caused by heterozygous mutations in the CSNK2A1 gene on chromosome 20
OCNDS affects both males and females
OCNDS is estimated to have an incidence of 1 in 100,000 meaning that for every 100,000 babies born, 1 will have OCNDS. This data is derived from a publication extrapolating the relative incidence of rare diseases vs. others with known incidence (ncbi.nlm.nih.gov/pmc/articles/PMC9687899). The data for the CSNK2A1 gene is located in the supplemental tables
There is not a definitive cure for OCNDS yet
Find answers to common questions asked by OCNDS families here
Review our Clinician one-pager for quick facts about OCNDS