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.