Privacy & Cookie Policy

The Spina Bifida Association ("we", "us", "our") respects your privacy. This policy explains what information we collect through this website, why, how we use cookies, and the rights you have — wherever in the world you're visiting from, including under the EU/UK General Data Protection Regulation (GDPR), the California Consumer Privacy Act (CCPA/CPRA), and Australia's Privacy Act 1988.

1. Information we collect

We only collect what's needed to run the specific feature you use:

Where	What we collect	Why
Newsletter sign-up form	First name, email address	To send you the newsletter you asked for and confirm your subscription
Contact form	Name, email address, message content	To respond to your enquiry
Automatically, for any visitor	IP address, browser type, pages viewed (only if you consent to Analytics cookies)	To understand how the site is used and improve it

We do not ask visitors to submit personal health information through this site. If we ever add a feature that invites you to share your own or a family member's health-related story, we will clearly label it, ask for separate explicit consent, and handle that information as a "special category" of data under GDPR.

2. How we use your information

• To deliver the newsletter and respond to enquiries you send us.
• To keep the site secure and working correctly.
• With your consent only, to measure site traffic (Analytics) and to measure the effectiveness of our Google Ads campaigns (Marketing).

We do not sell your personal information, and we do not share it with third parties for their own marketing purposes.

3. Cookies & similar technologies

We use three categories of cookies, which you can control at any time using the Cookie Settings link in the footer of every page:

• Necessary — always on. Used only to remember your cookie preference and to make forms work. The site cannot function without these.
• Analytics — off unless you enable it. Helps us understand aggregate visitor behaviour.
• Marketing — off unless you enable it. Supports Google Ads conversion measurement so we know whether our advertising is helping people find support. No marketing or analytics cookie is set until you actively opt in.

We use Google's Consent Mode, which tells Google not to set advertising or analytics cookies until you say yes.

This site also loads fonts from Google Fonts. Google may process your IP address to serve these fonts; this is treated as strictly necessary to render the page and is not used for advertising.

4. How long we keep your information

Newsletter and contact-form submissions are kept for as long as you remain subscribed or until you ask us to delete them. You can unsubscribe from the newsletter at any time using the link in any email we send, or by contacting us directly.

5. Your rights

Depending on where you live, you may have the right to: access the personal information we hold about you; correct it; ask us to delete it; object to or restrict certain processing; withdraw consent at any time; and receive your data in a portable format. To exercise any of these rights, contact us using the details below.

If you are in the EU or UK, you also have the right to lodge a complaint with your local data protection authority. If you are in California, you have the right to know, delete and opt out of the "sale" or "sharing" of personal information — we do not sell or share personal information as defined by the CCPA/CPRA.

6. Children's privacy

Our newsletter and contact forms are intended for adults (parents, caregivers, clinicians and adults with Spina Bifida). We do not knowingly collect personal information from children.

7. Changes to this policy

We may update this policy from time to time. The "Last updated" date at the top of this page will always reflect the latest version.

8. Contact us

Questions about this policy or your information? Email us at contact@sbfv.org.au or write to Spina Bifida Association, 1600 Wilson Blvd, Suite 800, Arlington, VA 22209.