Health Data Privacy Policy

What we collect

Only what you choose to enter. Every field is optional unless a form marks it as required.

• About you: a pseudonym you choose, your situation or diagnosis (for example familial hypercholesterolemia, high Lp(a), statin intolerance), age range, sex, country and optional state, ethnicity, and related conditions such as diabetes.
• Treatments: medicine name, dose, start and end month, outcome, side effects, whether you would recommend it, how you paid, insurance outcome, days to approval, monthly price and coupons.
• Lab results: date, total cholesterol, LDL, HDL, triglycerides, Lp(a) and apoB.
• Posts: your story, follow-up updates, comments, questions and answers.
• Activity: helpful votes and thank-you notes you give, topics and medicines you follow, and your consent choices with the date and policy version.
• Account: your email address and sign-in details, held by our sign-in provider (Clerk), not in our database.
• Counts: how many times a story or question was read. We count reads, not readers: we don't record who read what.

We do not collect names, dates of birth, street addresses, photos, lab report images, or your precise location. Tools that use your own numbers, like the treatment builder, the guided tour and the exhibits in The Collection, run in your browser and send nothing to us. The guided tour keeps your ticket, passport stamps and take-home card in this browser's storage only; “Start over” on the take-home desk clears it.

Why we collect it

• To show your experience to other people with high cholesterol, under your pseudonym.
• To show community summaries (for example, what share of people stopped a medicine for side effects). Summaries use only real submissions and appear only when at least 5 people are counted.
• To show you your own history, your impact, and notifications on your dashboard.
• If you opt in, to email you follow-up reminders and a monthly digest.

We do not use your health information for advertising, and we do not build profiles to sell.

Who processes it

We use a small number of service providers who process data only to run the site for us:

• Clerk: sign-in and account management (holds your email).
• Google Firebase (Firestore): the database that stores what you share.
• Resend: sends emails you opted in to.
• Vercel: hosts the website.
• Google Analytics: counts visits to public education pages (such as Learn, Questions and the guided tour) so we know what helps. It is switched off on sign-in, sharing, dashboard and case pages, never receives anything you enter, and runs with Google signals and ad personalization off.

We never sell your data, never share it with advertisers or data brokers, and use no ad networks or ad tracking pixels. We would share information only if the law requires it, and we would tell you unless the law forbids that.

Who can see what

• Public: your pseudonym and what you post (stories, treatments, labs, updates, comments, questions, answers), plus helpful and thank-you counts and your contributor level.
• Private: your email, your account ID, which posts you voted on or thanked, what you follow, and your consent records.

Anything public can be read by anyone, including search engines. Please don't include anything that identifies you, like your name, your doctor's or clinic's name, or contact details.

Your rights and choices

• Access and download: use “Download my data” on your dashboard for a copy of everything you shared.
• Delete: use “Delete everything I shared” on your dashboard. It removes your journeys, treatments, labs, posts, votes, thank-you notes, follows and consent records.
• Withdraw consent: you can stop emails any time from your dashboard or the link in any email. To withdraw consent to us holding your health information, delete what you shared.
• Ask us: email privacy@lipid.site for anything you can't do yourself, or to appeal a decision. We respond within 45 days.

We will not treat you differently for using any of these rights.

How long we keep it

Until you delete it. When you delete, it is removed from our live database right away. Copies in our providers' backups expire on their normal schedules.

Security

The database is reachable only from our own servers with a restricted service account, never directly from your browser. Connections are encrypted. Secrets are kept in our hosting provider's encrypted settings. Your email is never stored next to your health information.

If something goes wrong

If we learn of a breach involving your information, we will notify affected people, and regulators where required (including the FTC under its Health Breach Notification Rule), without unreasonable delay and within the time the law requires.

Children

lipid.site is for adults. You must be 18 or older to create an account or share anything. If we learn that someone under 18 shared information, we delete it.

Where you live

Anyone can read lipid.site. For now, only people living in the United States can share. Some states give extra rights over consumer health data, including Washington (My Health My Data Act), Nevada, and Connecticut, and California gives rights over sensitive personal information. We apply the strictest of these rules to everyone: we collect health information only with your consent, never sell it, and let you see and delete it.

Changes

If we change this policy in a way that affects how we use your health information, we will ask for your consent again before your next post. The version and date are at the top of this page.