Privacy Notice

How Rarevia looks after your information

Last updated: 28-09-2026 · Version 2.2

Rarevia is built for families managing rare genetic conditions. Trust is the whole point of what we're building, so this page tells you what information we collect, why, and what we'll never do with it.

Who we are, and what Rarevia is

Rarevia Ltd is registered in England (company no. 17383561), at 124 City Road, London EC1V 2NX, and with the Information Commissioner's Office, registration ZC254371. Rarevia is an app for parents and carers of a child with a rare genetic condition, and for adults living with one themselves. It helps with the part of rare disease life nobody hands you a tool for: keeping everything in one place. You say or type what's happening, such as something you've noticed, an appointment, or a question for next time, and Rarevia sorts it into things you can use: a summary, in your own words, of how things are now, a timeline of what's happened, and a view of the last three months to take to appointments.

Rarevia is not a medical device and isn't meant to be used as one. It doesn't diagnose, assess, monitor or triage anyone's health, and it doesn't give medical advice. It can't tell whether something is urgent, and nobody at Rarevia sees what you write as you write it. Decisions about care belong with you and the people who treat you. Rarevia keeps what you know in order, in your own words, so you can share it with them.

If you have any queries about our mission and product, drop us an email at info@rarevia.co.

What do we collect?

If you join the waitlist

We collect your first name and email, whether you're a carer, a patient (18+), a clinician or someone else, your country, and, if you choose to tick any, which parts of rare disease life are hardest right now. There's deliberately no box asking for your story or your child's details.

We use this to send you occasional, human-written updates (one-click unsubscribe in every email) and to understand who's waiting for Rarevia so we build the right thing first.

If you tick the box about trying the app early, we use your details for one more thing: Rachel, our founder, may email you personally to explain what's involved. It's a small group, so not everyone who ticks will hear about a place. Ticking it doesn't commit you to anything.

If you visit the website

Basic, anonymous visit statistics only (which pages are read, roughly where visitors are from), collected by Framer, the service our website is built with. No cookies, and it can't identify you.

Your account. You'll create an account so we can give you access and keep your agreement on record. You can sign up with an email address and password, or with your Google account. If you use Google, Google passes us the name and profile picture on that account, and the picture is loaded from Google when the app shows it.

Where your sign-in details sit. Sign-in is handled by Firebase Authentication, part of Google. Your email address, your password (which Google stores in a form nobody can read back, including us) and, on the Google route, that name and picture are held on Google's servers in the United States, because that service is not offered in a UK or European region. Google also sends the emails that confirm your address or reset your password, on our behalf. Nothing about anyone's health is ever kept there. The transfer is covered by the standard clauses approved for this purpose in UK and EU law, under our contract with Google. The records you write live somewhere else, on servers in London, and the next few paragraphs are about those.

Everything you share. What you type or say about your child's health, or your own: the condition's name, symptoms, treatments, appointments, questions and notes. This is sensitive information, and the app asks for your explicit agreement before any of it is collected. If you're a parent, you're agreeing on your child's behalf. If you're using Rarevia for yourself, you're agreeing for yourself.

How it's stored, and who can read it. Your words are encrypted before they are saved: what you noticed, appointment and task titles, treatments, notes, questions, and the name of the person the records are about. Your family's records have their own key, and that key is itself locked away in a Google key vault in London that no person at Rarevia can take a copy of. Someone who stole a copy of our database would get scrambled text and nothing to unscramble it with. Your records are kept on servers in London.

Rarevia's systems can read your records. That is how the app builds your summary and shows you the last three months. In practice:

• No person at Rarevia holds the key. Only the running app does.

• Staff can reach records only through the app's own screens, signed in the way you would be. The database itself holds scrambled text. Every time a record is unlocked, Google's audit log records it.

• Changing the app, or the permissions it runs with, is limited to named people, and every change is recorded in a log that cannot be switched off. Today that is one person: Rachel Ho, our founder.

Rarevia is not end-to-end encrypted, and we do not claim to see nothing at all.

Some things are kept readable, because the app has to sort by them: the condition's name, the person's date of birth, their pronouns and country, your email and time zone, the condition's Orphanet reference number, the dates and categories your entries are filed under, and when you last opened each main screen (which is how the app marks things as new since you last looked). In a rare condition, a condition name and a date of birth together can point to very few people, even with the names locked away.

A forgotten password loses nothing. Reset it the ordinary way and your records are still there. They also survive a lost, broken or replaced phone: sign in on a new device and they are there. Saving your summary as a PDF from time to time is still a good habit, because it is a copy you hold yourself.

An AI service helps sort what you share. When you add an update, it is sent briefly to Google's Vertex AI, which turns your words into a list for you to check. This happens before your words are encrypted, so it is the point where they are readable outside Rarevia.

• Sometimes there is a second step. If your condition has a guide in the app, Rarevia may check whether what you wrote is about the same subject as a topic in that guide, so it can show you a link to that page. Often it does this by simple matching inside Rarevia. Sometimes it asks the same Google AI service a second time, sending only the things you noticed, as the first step wrote them down, together with sentences from the guide. When a link is shown, the app shows the guide's sentence next to the words of yours it matched, so you can see why the link is there. It points to general reference information about the condition. A link appearing says nothing about your child's health or your own, and neither does no link appearing. It only means what you wrote and a sentence in the guide seemed to be about the same subject. It isn't advice, and what to make of it is for you and the people who treat you.

• These steps may be handled outside the UK and Europe. The model we use is not yet offered in a European region. Your stored records, the keys, and any audio stay in London and Europe. The transfer is covered by the standard contractual clauses approved for this purpose under UK and EU law, in our contract with Google. When the model is available in Europe, we will move it and this paragraph will change.

• What Google keeps. Under Google's terms, your words are not used to train Google's models. Google has also agreed, for Rarevia, not to keep them for its own safety reviews. From 15 October 2026, Google may hold an encrypted copy of what the app sends for up to 24 hours, to make sorting faster; it is deleted on its own after that.

Nothing goes into your record until you tick it and save. You check every line first, and you can untick, move or reword any of them.

Your original words are kept, even if you save nothing. The app keeps what you typed or said each time you add an update, together with the list it offered you, encrypted like everything else. That is true even if you close the list without saving anything. You never see these again in the app. They are kept so there is an accurate account of what you shared and what the app did with it. They are included when you ask for a copy of everything, and erased when you delete your account.

A fixed list of words that brings up help information. Before it shows you the list, the app checks whether your words include any of a short, fixed list of words and phrases, such as "seizure", "choking" or "self-harm". If they do, it shows a panel saying where help is available. The panel appears whenever one of those words is there, whatever the rest of the sentence says. Rarevia can't tell whether something is urgent. A panel appearing says nothing about your situation, and no panel appearing says nothing either: the list is short and it misses things. Nobody at Rarevia sees what you write as you write it. This is simple word-matching inside Rarevia, with no AI involved. That a panel was shown is noted only inside your encrypted record.

Voice. If you speak instead of typing, what you say is turned into text and the audio is deleted straight away. That happens on Google servers in Europe. To help with spelling unusual words, the app sends a word list along with the audio: your condition's name and its other names, the treatments on your profile, the names of medicines and medical terms from your condition's guide, and common clinic and test names. The list doesn't depend on what you say, and it isn't a prediction of anything. It is only there for spelling. We keep the words, not your voice, and your voice is never used to identify you.

Saving a PDF. The PDF is made on your own phone. We keep a note that a summary was saved and which items were in it, so you can see what you've shared before. We don't keep the PDF, and we never send it anywhere.

Leaving the app. Links in a condition guide open the source's own website. Each link is about your condition, so that website learns which condition you're reading about, in the way any website does when you visit it. If your condition has no guide yet, "Ask us to consider it" opens your own email app with a message you can choose to send. Nothing is sent unless you send it.

Technical logs. Our servers keep short-lived technical logs so we can work out why the app did what it did. They hold counts, dates and reference codes, including your condition's reference number and whether a link to a guide page was shown. They never hold your words. They are kept for about 30 days and aren't removed early when you delete your account.

The records we keep on our side. Your account details, and a receipt of your agreement: the date, the version of this page, how you signed in, and what you agreed to. Nothing about anyone's health. UK law requires us to be able to show that consent was given, and this is how. Today that receipt is deleted with your account.

Deleting everything. In the app, Profile → Delete account or data → Delete everything removes it all from our storage, including the kept original words, and it leaves our backups within seven days. It can't be undone. It also deletes your sign-in details from Google's service.

What we never do. No advertising. We never sell or share anyone's records, and nothing individual about you or your child goes to anyone outside Rarevia and the services named on this page. No sharing with clinicians, schools or insurers. Your PDF is yours to give. No scanning your calendar or contacts. No notifications, emails or reminders based on what you have written.

In future, we may ask you something. Rarevia intends, in future, to combine what families have written in the app, with names and contact details removed, into overall figures, and to sell those figures to companies developing treatments, including pharmaceutical companies, and to organisations that run health services. That is part of how Rarevia would be paid for, and we are saying so now rather than later.

None of that happens today. Nothing is built, and nothing about your family has been used this way. We will never use your records to build figures for anyone else, or for research, without asking you first. If we build it, this page will say so before it starts, and you will see a separate choice of your own. You can say no, and nothing changes: the app works the same, and we will not keep asking.

Counting how the app is used only if you say yes. When you create an account there is a second, optional box. Tick it, and Rarevia counts how the app is used: which screens and buttons were used, how many items an update had and what kind they were (a symptom, a treatment, a question), whether the condition has a guide in the app, how long sorting took, and the browser and device type. It counts names of screens and buttons, simple category labels and numbers, never your words, your name, your email, a date of birth or the name of the condition. You appear under a scrambled account code. PostHog, a US company, holds the count for us on servers in Germany for up to seven years. When you delete your account we ask PostHog to delete it, which can take a few weeks. You can turn it off any time in Profile. That stops the counting from then on; it does not remove what was already counted. None of it is used to decide anything about you or your family.

If you try the app early and talk to us about it

If Rachel invites you to try the app early, her email explains what's involved, and you reply to say you're happy to take part. That reply is our record of your agreement. You can change your mind at any time, and it never affects your use of Rarevia.

• Calls are never recorded, on video, audio or by any note-taking tool.

• Rachel's notes are about the app, not about your family. They are kept under a code, not your name, and they never include health details, even if some come up while you talk. Your name and email are kept separately, only so she can reach you.

• Rachel doesn't open your records. Rarevia's systems can read them, as explained above, but she won't look at yours unless you ask her to, to sort out a specific problem.

• If something goes wrong in the app, please describe it in words where you can. If you send a screenshot that shows your records, she will note the problem and delete the message.

• Nothing you tell us appears anywhere public.

If you email us

We use what you send to reply, and delete it once it's dealt with. Please don't send health details by email. The app is the safe place for those.

The legal bit, briefly

UK and EU law say we need a proper reason for everything above. Using the app: we need your account and your records to provide the service you signed up for, and because those records are about health, we also ask for your explicit consent, which the law rightly holds to a higher standard. You can withdraw it at any time by deleting your account. The waitlist, trying the app early, and talking to us: your consent, which you can withdraw at any time (unsubscribe, or tell us). Anonymous site statistics: our legitimate interest in knowing whether the website works, done in a way that can't identify anyone. Wherever you live, we apply this same standard, the strictest one we follow, to everyone.

Where information lives, and for how long

Waitlist details: collected through our website (built with Framer, a European company) and kept in a private spreadsheet in our Google Workspace account, until you unsubscribe or 18 months after our last update, whichever comes first.

Your app records: encrypted, on Google's cloud servers in London, for as long as you keep your account, with backups that hold the same encrypted form and clear out after seven days. The key that unlocks them is held in Google's key service, also in London. Voice is turned into text on Google servers in Europe, and the audio is deleted immediately. The AI service that sorts your words handles them only for the moment it takes, and, as explained above, that step may happen outside the UK and Europe. Your sign-in details sit with Firebase Authentication in the United States. Emails to us arrive in our Google Workspace mailbox.

Usage counts: with PostHog, a US company, on its servers in Germany, for up to seven years, and deleted at our request when you delete your account.

Where a service is a US company or holds data in the US, the transfer is covered by the standard clauses approved under UK and EU law, in our contract with that provider. The current list of services is always available by email.

Your rights

You can ask us any time to show you what we hold about you. In the app, you're in direct control: saving your summary as a PDF and deleting everything are both in the app, work straight away, and need no request to us. Or email us at info@rarevia.co for any relevant enquiry.

About children

Rarevia accounts are for adults aged 18 or over: parents, carers, and adults living with a condition themselves. Children don't use the app, but information about a child is at the heart of Rarevia, so we treat every safeguard on this page as being for the child first: their information is encrypted, nothing individual about them is ever sold or shared with anyone outside Rarevia, and it is deleted the moment you choose. If we ever want to use records to build overall figures for companies developing treatments, organisations running health services, or researchers, we will ask you first. You can say no, and nothing changes.

As children grow up, their information increasingly belongs to them, and as the app matures we'll build ways for young people to understand what's been recorded about them. This page will change before anything else does.