Your privacy
What NotJustYou collects through this website, why, who helps us handle it, and the choices you have. Last updated October 27, 2026.
Who we are
NotJustYou Sickle Cell Support Organization is a non-profit based in Edmonton, Alberta. For any question about your information, or to make a request, email sicklesupport@notjustyou.ca. That inbox is our privacy contact.
What we collect, and why
- Cells registration: your name, email, city, province, phone (if you add it), whether you live with sickle cell or care for someone, and that you’re 16 or older. We use it to confirm your membership, send meeting links and reminders, and invite you to CELLS.irl dinners near you.
- The member portal: your details, plus your year of birth and type of sickle cell if you choose to add them (for a caregiver, the type of the person you care for). Only the NotJustYou team sees them.
- Free therapy requests: who the sessions are for, and a phone number and note if you add them. We check that you’re in Cells, then send your request to Bethesda Therapy, who contact you for intake. What you talk about in therapy stays between you and your therapist; NotJustYou only receives anonymous totals, like the number of people served.
- Other forms (contact, Bright Box requests, volunteer applications, partnership guide requests): what you send, so we can answer and help, and for a guide request, to email you the guide. Sickle Stories and their photos are published only with your approval.
- The SS Feed: your email, kept in Mailchimp to send the newsletter. Every issue has an unsubscribe link.
- Donations: handled by Stripe. We receive your name, email and gift, never your full card number.
Cookies
- Signing in to the member portal uses a cookie that keeps you signed in, and a second one that only says you may be signed in. They aren’t used for anything else.
- With your yes to our cookie notice, a Google Ads cookie tells us when someone who found NotJustYou through an ad goes on to join Cells, give or volunteer. It’s never used to show you ads, it never receives what you type in our forms, and it never runs in the member portal. Without a yes, nothing from Google loads. Change your answer any time with “Cookie choice” at the foot of every page.
- Your browser also remembers your cookie choice.
Who helps us
We use a few services to run the site and our programs: Cloudflare (hosts this website and our records), Google Workspace (our email, calendar and Cells records), Resend (sign-in codes and notices), Mailchimp (the SS Feed), Stripe (donations) and Bethesda Therapy (therapy requests you ask us to send). Some of them store information outside Canada, including in the United States, where it may be subject to the laws there. We never sell your information or share it for advertising.
How long we keep it
For as long as you’re involved with NotJustYou and we need it for the reasons above. If you leave Cells, we keep a record that you were a member, so you can come back; you can ask us to delete it.
Your choices
You can ask to see the information we have about you, correct it, or ask us to delete it, and we’ll do it unless the law requires us to keep something. You can also unsubscribe from the SS Feed, leave Cells from the member portal, or change your cookie choice at any time. Email sicklesupport@notjustyou.ca. If you’re not satisfied with our answer, you can contact the Office of the Privacy Commissioner of Canada.
Keeping it safe
The site uses encrypted connections, sign-in codes instead of passwords, and access limited to the NotJustYou team. Cells is for people 16 and older; caregivers can pass therapy sessions to someone under 16 they care for, and Bethesda Therapy collects that person’s details directly.
Changes
If this changes, we’ll update this page and the date at the top.