Privacy | Long COVID Action Canada

We are an emerging patient-led initiative, started by someone who lives with this illness. We collect as little as possible and treat what you give us the way we would want our own information treated.

What we collect

Disability paperwork barrier notes help identify gaps and shape advocacy requests. Share a note or optional files; name and email are optional. Notes and files stay private, do not subscribe you to updates and are not an application or appeal. We will ask before publishing any part. Redact names, claim numbers and unnecessary medical details before sending.

Study suggestions collect the study name and details you provide, plus an optional official link, name and email. We review submissions privately before adding or correcting a public research listing. Your contact details are not published and submitting does not subscribe you to updates. Do not include medical records or sensitive health information.

Contribution forms collect your question, note or offer of help and its task. A source, name and email are optional. We use this to review your contribution and, if you give an email, reply. Contributions are private and do not subscribe you to updates. Care-gap notes, and an optional province or territory and main barrier, help shape our care-access campaign. Do not send medical records or identifying details about other people. We will ask before publishing any part of your note.

If you fill in the Join the network 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.

If you use the Suggest an initiative form, we ask what you think we should look at; everything else — why it matters, sources, who could act, your name and email — is optional. We use it only to review the issue and, if you gave permission, to contact you about it. Submitting an issue does not add you to the network, and we do not publicly display submissions.

If you allow it below, the homepage uses Google Analytics to measure visits and website use. Analytics are off until you choose to allow them. Google Analytics may use cookies. Read how Google uses information from sites that use its services. We do not display advertising.

Website analytics preference

Allow Google Analytics on the homepage

You can change this choice here at any time. It is saved on this device.

Your browser also remembers your light/dark and text-size choices and actions you mark as done. These settings stay on your device and are not sent to LCAC or included in our analytics. Use Undo to clear an action, or clear this site’s browser data to reset all saved choices.

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 or rent your information. We use the service providers described below to run the forms and email updates. We will not publish your name or any detail you give us without asking you first.

Email updates are optional. If you select the email-updates checkbox, we send a confirmation email through Brevo. You are added to the updates list only after you confirm. Joining the network without selecting that checkbox does not subscribe you to email updates.

You can update your existing profile using a private link sent to the email you used to join. The link expires after 30 minutes and stops working after a saved update. Anyone with that link can view and edit your profile during that time, so do not forward it. We store a hash of the link token in Supabase, not the token itself. Profile edits do not change your email subscription, and the original Netlify form submission remains an intake record.

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

Netlify hosts this website, filters form spam, and retains a copy of submissions. Its processing may take place in the United States. Verified submissions are also stored in our private Supabase database in Canada (Central). Selecting a Canadian database region does not guarantee that all provider support, logs or other processing remain in Canada.

Correspondence and disability barrier attachments are stored in private Supabase file storage, separate from the public website. Access requires LCAC’s inbox credentials. The form submission stores only a file reference; the attachment is not stored in Netlify Forms. Remove personal details you do not want to share before uploading. We will ask permission before publishing any part of a reply or attachment. You can share replies / correspondence through the form or forward correspondence to hello@longcovidaction.ca.

Brevo processes email addresses, confirmation requests, subscriptions, unsubscribe information, and private profile-update emails and links that you request. Brevo says its databases are hosted in the European Union. We do not send your patient or caregiver status, initiative submission, skills, or optional form messages to Brevo.

Information processed outside Canada may be subject to the laws of those jurisdictions. Read more in Netlify’s privacy policy, Supabase’s privacy policy, and Brevo’s data-storage information.

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.