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Adult and child hands holding encephalography brain paper cutout,autism, Stroke, Epilepsy

Newly Diagnosed?



We are here to extend a warm embrace to newly diagnosed families of children with CUL3-related neurodevelopmental disorder. We understand that receiving this diagnosis can be overwhelming and bring about a multitude of emotions. As a group of individuals who have firsthand experience with CUL3, we are committed to providing a sense of community to help you navigate this journey.


We want you to know that you are not alone in this journey. We are here to support you and offer you a safe and inclusive space where you can share your experiences and find comfort in the knowledge that others can relate to what you are going through. Together, we are working to build a community that is welcoming to everyone.


We invite you to join us in our online support groups, where you can connect with others who share your interests and struggles. We also organize virtual meetups, which are advertised through these channels.

We also invite you to join our mailing list, and receive updates from our patient advocacy group. This may include information on fundraising efforts, virtual meet-ups, and organized talks with researchers/medical professionals.  


It is completely understandable to have many questions and concerns about CUL3. The best way to address any questions or concerns you may have is to speak with your doctor or medical professional, who can provide personalized information and guidance.


Our website offers a CUL3 101 section with some common questions that families may have, a list of potentially useful web resources, and a research section with a list of available publications on CUL3. Additionally, connecting with other families who have been through similar experiences through our online support groups can be helpful in understanding your loved one's diagnosis. 


There are a few ways for you to get involved and make a difference for CUL3-related neurodevelopmental disorder.

Participate in Research

Participate in research related to CUL3, which can help to advance our understanding of this disorder.


Volunteer your time with our patient advocacy group by joining the family advisory committee and helping out in various capacities. Contact us if you are interested.  


Make a donation to help support our mission. Every contribution, no matter how big or small, can make a difference.

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