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Register with DLG4 SHINE

If you are the parent or primary caregiver for a DLG4 patient, we encourage you to register with us. This information will be used to communicate research and clinical trial opportunities, to share educational and advocacy resources, as well as to help families connect with each other. Your information will never be shared for commercial purposes. If you are unsure if you are already listed or need to make changes to your record email us at contact@shinesyndrome.org.

Sex at Birth of the Person diagnosed with DLG4-SHINE
Gender of the Person diagnosed with DLG4-SHINE
Type of Genetic Mutation You can usually find that information in the genetic report, or a genetic counselor can help you identify it.
Please describe the main symptoms impacting the Person diagnosed with DLG4-SHINE (select all that apply and add any additional details other "Other" )
Would you like to be contacted by members of the foundation/other affected families for support?
Yes
No
Would you like to be contacted about research opportunities?
Yes
No
Would you like to appear on the community map on our website? No names or addresses will be shown, just a dot that there is patient in that country/state.
Yes
No
Would you be willing to submit a short story and a photo of the DLG4 SHINE loved one for our website? Please note that without pictures from patients who have DLG4 SHINE, it is very difficult to fundraise money for research or to attract scientists.
Yes
No
In what language would you like us to mail you the medical considerations document?

DLG4 SHINE Step-by Step Guide

We've created this step-by-step guide to help newly diagnosed DLG4 SHINE families navigate through the available resources and important process of registration. Start the process or pick-up where you left of by clicking on a step below. 

Version Française
Versión en Español

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