Understanding
Okur-Chung Neurodevelopmental Syndrome
Simons Searchlight research registration Zoom party April 17, 2021
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:
Jules’ Story
Kirsty’s Story
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:
Jules’ Story
Kirsty’s Story