About OCNDS
Okur-Chung Neurodevelopmental Syndrome (OCNDS) is a rare genetic disorder identified in 2016, marked by developmental delays and neurological differences from CSNK2A1 gene mutations. These resources offer an overview for clinicians and families, covering symptoms, inheritance patterns, and therapeutic recommendations. Discover the CSNK2A1 Foundation’s mission to further research, connect the community, and stay updated on developments. We encourage you to explore these resources to support those affected by OCNDS.
What is OCNDS
FAQs
Discover important information about Okur-Chung Neurodevelopmental Syndrome (OCNDS), a rare genetic disorder impacting development and neurological function, and learn how you can connect with resources and support.
Informational Handouts
These handouts provide essential information about Okur-Chung Neurodevelopmental Syndrome (OCNDS), including its causes, symptoms, and recommended therapies, making it a valuable resource for families, educators, and healthcare providers to raise awareness and support those affected.
For Clinicians
Clinical Information
Explore Okur-Chung Neurodevelopmental Syndrome (OCNDS), a rare genetic disorder marked by developmental delays and neurological differences, with detailed information on its genetic causes, clinical presentation, and current management strategies tailored for clinicians.
How to Help Patients Access Genetic Testing
The CSNK2A1 Foundation has partnered with Probably Genetic to provide free, patient-initiated genetic testing and counseling for individuals potentially affected by Okur-Chung Neurodevelopmental Syndrome (OCNDS), making it easier to access diagnostic services.
Project FIND-OUT
Project FIND-OUT offers families free neurological assessments, whole genome sequencing, and personalized genetic counseling to help understand their child's condition and guide next steps, all accessible remotely to ensure support is always within reach.
About CSNK2A1 Foundation
About Us
The CSNK2A1 Foundation is dedicated to finding a cure for Okur-Chung Neurodevelopmental Syndrome and enhancing the lives of those affected through a collaborative, four-pillar approach involving our Board of Directors, Scientific Advisory Board, Parent Advisory Board, and the broader OCNDS community.
Our Staff
Introducing the team behind the CSNK2A1 Foundation, dedicated to advancing its mission for the OCNDS community.
Boards
Introducing our esteemed boards that steer the strategic direction of the CSNK2A1 Foundation. These include our Board of Directors, Scientific Board, and Parent Advisory Board.
Transparency
The CSNK2A1 Foundation relies on the generosity of donors to fund critical research for Okur-Chung Neurodevelopmental Syndrome, ensuring every contribution is used efficiently to bring us closer to a cure while maintaining financial transparency.
News & Updates
Our Voice
Read our latest blog articles that represent the voice of our community and our foundation.
OCNDS Compassion Initiative
About the OCNDS Compassion Initiative
The OCNDS Compassion Initiative, founded by Jennifer Sills and Maahin Manzoor Khan, aims to bridge the gap between the medical community and families affected by rare diseases by promoting education and understanding of rare disorders among medical professionals, ensuring that patients and their families are valued contributors to their care.