Newly Diagnosed

Getting a rare disease diagnosis can be a scary time in a family’s life. Know that you are not alone. Those with DLG4 variants have different sets of symptoms and no two patients are precisely the same. Early intervention, intensive therapies and appropriate seizure control are critical factors in patient outcomes. We are a small but mighty community, and we are all in this fight together.

What Comes After A DLG4 SHINE Diagnosis?

Determining where to go after receiving a dignosis can feel overwhelming. We want to ensure that DLG4 patients and families have useful information to help guide them. We put together a step-by-step guide to help families navigate this process. Follow these steps to learn more about DLG4 SHINE and to get involved in building our community, spreading awareness, and finding treatment for our loved ones. If you are a parent or caregiver please join our Parent Support facebook group.