Stories, data, and hope — together
A private, parent-built space to understand your child’s journey, share experiences, and connect with families who truly understand. We turn individual stories into shared knowledge and support.
Everything a GNAO1 family needs, in one place.
MyGNAO1 brings together the tools, information, and community that families navigating GNAO1 rarely find in one place — and almost never find at all.
Patient Profiles
Create a private profile for your child. Record their diagnosis, mutation, and background at your own pace. All profiles are private by default — you control what is shared, with whom, and when.
Create a Profile arrow_forwardTreatment Logging
Log medications and treatments your child has tried. Record outcomes honestly — including what did not work. Your entries contribute to a shared understanding across families.
Outcomes are recorded honestly — partial improvement, no effect, and side effects are all valid entries.
Privacy by Default
All profiles are private by default. Data is never sold. Research access is explicit, opt-in, and reversible at any time.
GNAO1 families exist across the world.
The family map shows the global presence of families registered on MyGNAO1, aggregated by country. It is not a social network. It is a quiet answer to a question many families ask when they first receive this diagnosis.
Country-level only
No precise locations are ever displayed. Presence is shown at the country level to protect family privacy.
Visible only when you choose
Appearing on the map is optional. Families control their visibility at all times.
An open invitation.
If you are a family affected by GNAO1 — use it, share it, and tell us what is missing. If you have skills to offer in engineering, design, content, or community support — there is a place for you here.