STXBP1 Additional Caregiver Registration Form
If you are the parent or primary caregiver for a STXBP1-related disorders patient:
We encourage you to register in our Contact List below. Your information will be linked to the SXTBP1-patient record previously submitted. Your contact details 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.
All other community members (aunts, grandparents, siblings, etc.):
If you are interested in learning more about STXBP1-related disorders, supporting our community of families, and staying up-to-date on events and research, sign up for our Mail List using the form here. If you are a grandparent of an STXer, you can sign up for our Grands Society here.