STXBP1 Parent and Primary Caregiver Contact List

If you are the parent or primary caregiver for an STXBP1 patient, we encourage you to register in our Contact List below. 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.

Other community members who are interested in learning more about STXBP1 disorder, supporting our community of families, and staying up to date on events and research are encouraged to sign up for our Mail List using the form here.

Contact List

Your first name

Your last name

Your email

Your phone

Additional parent / caregiver first name

Additional parent / caregiver last name

Additional parent / caregiver email

Optional

Additional parent / caregiver phone

Name of individual with STXBP1

First Name

Last Name

Year born

YYYY

Gender

Your relationship to individual with STXBP1

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.

Do you have another child with an STXBP1 mutation?

If you check yes, please register again for that child or email info@stxbp1disorders.org.

Yes

Your address

Street Address

City

State/Province

Country

Postal code

Would you like to be contacted by other families?

Yes

Would you like to be contacted for research opportunities?

This may be for research or clinical trial studies in the future.

Yes

How would you like to be shown on our community world map?

Choose what you would like us to display

Do you agree that the STXBP1 Foundation may contact you?

I agree and acknowledge that I am authorized to provide the contact list information about myself, my family, and the person(s) with an STXBP1 disorder. I also understand and agree that the STXBP1 Foundation may contact me to provide information about STXBP1 disorders, future research studies and trials and activities and programs offered by the STXBP1 Foundation.

* required field

STXBP1 Parent and Primary Caregiver Contact List

Contact List

ABOUT US

EMAIL

Info

Action