Parent and Primary Caregiver Contact List

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If you are the parent or primary caregiver for a DLG4 patient, we encourage you to register in this contact list. 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 just send us an email.

First Name *

Last Name *

Email Address *

Phone Number

Full Name of Person with DLG4 Related Synaptopathy *

Year Born *

Gender *

Male

Female

Your relationship to DLG4 Patient *

Parent

Primary Caregiver

Guardian

Genetic mutation

Use the coding DNA or protein syntax, which begin with a "c." and a "p." You can find these in your genetic report.

Type of Genetic Mutation

Usually located in the genetic report, a genetic counselor can also help you identify that.

Nonsense

Frameshift

Missense

Splice Site Mutation/Deep Intronice

Do not know yet

Please describe the patients clinic diagnosis. For example do they have seizures? Mildly, Moderately or Severely Impacted? As many conditions that you can list will be appreciated to determine if the patient is a good candidate for research studies. *

Would you like to be contacted by other families for support?
*

Yes

Would you like to be contacted for research opportunities?
*

Yes

How would you like to be shown on our community world map which will go on our website?
*

First Name/Year of Birth

First Name Only

Year of Birth Only

Anonymous

Do Not Display

Are you interested in donating the patients blood/skin sample for research? *

Yes

Maybe

I agree and acknowledge that I am authorized to provide the contact list information about myself, my family, and the person(s) with DLG4 Related Synaptopathy. I also understand and agree that the DLG4 Research Fund may contact me to provide information about DLG4 disorders, future research studies and trials and activities and programs offered by the DLG4 Research Fund
*

Yes I understand

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