SCN2A Australia respects your privacy and is committed to protecting the personal information you share with us. We handle personal information in line with the Privacy Act 1988 (Cth) and the Australian Privacy Principles. This policy explains what we collect, why we collect it, and the choices you have.
Personal data we collect and why.
Contact forms and newsletter
When you contact us or subscribe to updates, we collect the details you provide, such as your name and email address, so we can respond to you and send you the information you have asked for. You can unsubscribe from updates at any time.
The Family Map and Family Registry
If your family chooses to join our community, we ask for two different kinds of information, with two separate consents:
Map information (only with your explicit opt-in): a first name, state, and general area, shown publicly on the SCN2A Family Map. We never publish surnames, street addresses, precise locations, dates of birth, or medical details. Pins are placed approximately, reviewed by our team before appearing, and can be removed at any time on request.
Registry information (private, never published): contact details and, if you choose to share them, details such as an SCN2A variant or the primary doctor of the person with SCN2A. We collect this sensitive information only with your consent, and use it only to connect you with peer support, resources, events, and — if you have opted in — relevant research opportunities. Deeper clinical detail, like seizure history, is not collected by this form at all — that belongs to our separate natural history study, under its own consent. Saying no to any of this never affects the support you receive from us.
If you do not finish the registry form
We now save your answers to the registry form as you go, so if you start and then stop partway through, we still hold what you have already told us. That is why we ask for your consent at the very start of the form, rather than at the end.
If you do not finish, we keep what you have given us for 90 days from your last saved answer. In that time we may email or ring to see how things are going and whether you would like to finish. If we have not heard from you after 90 days, we delete it.
Even if you only got partway through, there is a record of what you told us, and you can ask us to delete it at any time, the same as any other information we hold about you.
Introductions between families
Introduction requests made through the Family Map come to our family support coordinator and go no further. We contact both families separately, and pass on details only once both have agreed to connect. Nothing you write is shown to the other family, and neither family's contact details are shared with the other without permission.
Donations and fundraising
When you donate or register for a fundraising event, our payment provider (Stripe) processes your card details — we never see or store your full card number. We keep your name, email, and donation details so we can issue your tax receipt and meet our obligations as a registered charity.
Embedded content from other websites
Pages on this site may include embedded content (for example, videos). Embedded content from other websites behaves as if you had visited that website, and those websites may collect data about you or use cookies.
How we use cookies.
This website does not use accounts, logins, or advertising cookies. Any cookies set are limited to those needed for the site and its embedded content to function.
Who we share your data with, and for how long.
We do not sell your information, and we do not share it outside SCN2A Australia except with the service providers who help us run our systems, where you have asked us to (for example, a research referral you opted into), or where the law requires.
Our service providers include website and database hosting (Vercel, Supabase), email delivery (Resend, and our mailing-list provider), payment processing (Stripe), and the tools we use to administer the organisation (Notion, n8n). Each provider only receives the information needed to perform its service.
We keep personal information only as long as it is needed for the purpose you gave it to us, or as long as we are legally required to keep records (for example, donation records for tax purposes). Registry information is kept while your family remains part of the community, and deleted on request.
The rights you have over your data.
You can ask us at any time for a copy of the personal information we hold about you, ask us to correct it, withdraw a consent you have given (including removing your family's pin from the map), or ask us to delete your information. This does not include data we are obliged to keep for administrative, legal, or security purposes.
How to reach us about privacy.
If you have questions about this policy or about how your information is handled, please get in touch:
SCN2A Australia
PO Box 442, Buddina QLD 4574
ABN 70 665 788 161