About 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.

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 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.

Foundation Updates

Get the latest updates from CSNK2A1 Foundation.

Newsletters

Read our latest newsletters and annual updates.

In the Press & Media

Review our latest press releases and mentions in media.

Our Voice

Read our latest blog articles that represent the voice of our community and our foundation.

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.