What we collect, and what we do with it.

We are a small patient-led initiative, and many of us live with this illness ourselves. We collect as little as possible and treat what you give us the way we would want our own information treated.

What we collect

If you fill in the Add your name form, we ask for your name and email, and optionally your city, province or territory, your connection to Long COVID (for example patient, caregiver, clinician), and anything you choose to write in the message box.

We do not use analytics, tracking cookies, or advertising of any kind. The only cookie-like storage on this site is a setting saved in your own browser to remember your light/dark and text-size choices; it never leaves your device.

Why we collect it

• To contact you about Long COVID Action Canada — new campaigns, opportunities to take part, and significant updates. We write rarely.
• To understand who is with us — roughly where people are and what perspectives they bring — so we can speak accurately about our support.

We never sell, rent, or share your information with anyone. We will not publish your name or any detail you give us without asking you first.

Your connection to Long COVID is sensitive information

Telling us you are a patient or caregiver is health-related information. That field is optional, and choosing not to answer changes nothing about how we treat you. We use it only in aggregate and never attach it to your name in anything public.

Where it is stored

Form submissions are stored by Netlify, the service that hosts this website, on servers located in the United States. That means your information may be subject to lawful access requests under United States law while stored there. Netlify’s own privacy policy is at netlify.com/privacy.

Your rights

Under Canadian privacy law (PIPEDA), you can ask us at any time:

• what information we hold about you;
• to correct it; or
• to delete it entirely.

Email hello@longcovidaction.ca and we will act on it promptly — usually within days, always within 30. You can also unsubscribe from any email we send using the link in the email or by writing to the same address.

The petition is separate

Our current petition is hosted on Change.org, which is a separate company with its own privacy policy. Signing it gives your information to Change.org under their terms, not ours.

Questions

Write to hello@longcovidaction.ca. If you are not satisfied with our answer, you can contact the Office of the Privacy Commissioner of Canada at priv.gc.ca.