Most, if not all, doctors have never heard of OCNDS and have no idea how to provide care for those living with OCNDS. We can change this! OCNDS families can make a difference today by signing up for the CSNK2A1 Simons Searchlight Natural History Study!
Are you interested in participating and would like to speak with an OCNDS parent on the Parent Advisory Board who is participating in the natural history study?
Do you want to sign up but it feels overwhelming?
You don’t need to do it alone. JOIN US on April 17, 2021 at 3pm EST for a Zoom registration party where members of the Parent Advisory Board and a Simons Searchlight representative will provide support in the registration process and answer your questions.
Register in advance for this meeting.
After registering, you will receive a confirmation email containing information about joining the meeting.
We are stronger together!
Read about 3 different OCNDS families and why they are choosing to participate in the Simons Searchlight Study:
We are 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. CSNK2A1 Foundation is operated and funded through a committed team of volunteers, advocates and researchers.
We are a 501(c)(3) non-profit organization. EIN #82-4220939.
© 2023 CSNK2A1 Foundation
1929 Van Ness Avenue
San Francisco, CA 94109
(415) 483-2488
The information provided is not intended to be a substitute for professional medical advice, diagnosis or treatment. Never disregard professional medical advice, or delay in seeking it, because of something you have read on this website. Read more...
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