Support & Information
Resources
Whether you have just received a diagnosis or you have been part of our community for years, these resources are here to help. Not sure where to begin? Start with Newly Diagnosed.
On this site
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Newly Diagnosed
Just received an STXBP1 diagnosis? Start here. A warm welcome and the top ways to connect with the community and get involved.
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Frequently Asked Questions
Answers to common questions about STXBP1 disorders, the Foundation and how to get involved.
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Key Publications
A reference list of the key research papers on STXBP1-related disorders for families, clinicians and researchers.
Connect with other families
These Facebook groups are safe places to connect with other parents and care providers across Australia and around the world.
Global research & studies
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US STXBP1 Foundation
Home of the USA STXBP1 Foundation — the latest global research updates and disorder information.
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Clinical Trials & Research
Information on natural history studies and clinical research you can participate in.
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Census Survey
Help us report on the Australian STXBP1 population. Responses are anonymised and shared with researchers.