Privacy policy

Last updated: July 2026

What we collect

We only collect information you choose to give us:

• Enquiries and requests — when you use our contact, support, or volunteer forms, we store your name, email, and message so our team can respond.
• Newsletter — your email address, on a double opt-in basis. We only add you to the list after you confirm from your inbox, and every email has a one-click unsubscribe.
• Donations — your name, email, and gift details. Card details are handled by our payment provider; we never see or store them.
• Accounts & the research registry — if you create a portal account we store your email and a securely hashed password. Registry health details are optional, kept separate from your account, and only shared with researchers when you have explicitly consented.

How we use it

To reply to you, deliver services you ask for, process and receipt donations, send the newsletter you subscribed to, and — only with your consent — match registry participants to relevant research. We never sell your data.

Cookies

When you sign in to the portal we set a secure, HttpOnly session cookie so you stay logged in, and we set a cookie carrying a security token that protects the forms on this site. Those two are strictly necessary — the site cannot work without them — so we do not ask permission for them.

We do not use analytics, advertising, or third-party tracking cookies. We run no tag manager, and our fonts are served from this site rather than from anyone else's, so simply reading a page here does not tell another company you did.

The one exception is the live-chat widget, which is run for us by a third party. It sets its own cookies and tells its provider which page you are on, so we ask before loading it and it stays unloaded unless you say yes. If you decline we remember that choice in a cookie of our own — that is all it holds, and it is the only way we can avoid asking you again on every page. You can change your mind by clearing this site's cookies in your browser. The widget is never loaded on the portal, the staff area, or the donation checkout, whatever you choose.

Your choices

You can unsubscribe from emails at any time, update or clear your registry profile from the portal, and ask us to access or delete your information by getting in touch. We keep submissions only as long as needed to help you and meet our legal obligations as a nonprofit.

Contact

Questions about your privacy? Contact us and we will be glad to help.