Terms of Use

Last updated: 31-07-2026 · Version 1.0

These terms are the agreement between you and Rarevia Ltd. If anything here is unclear, email us at info@rarevia.co.

Separate from these terms, our Privacy Notice explains what information we hold and how it's protected. Please read both.

1. Who we are

Rarevia Ltd., registered in England, company number 17383561, registered office 124 City Road, London, EC1V 2NX. Contact: info@rarevia.co.

2. What Rarevia is, and what it isn't

Rarevia helps you organise information about a rare genetic condition: what you've noticed, what letters have arrived, what you want to ask at the next appointment. It turns what you record into summaries, timelines, and things you can take to appointments.

Rarevia is not a medical device, and it is not medical advice. It does not diagnose, it does not monitor your child or you, it does not decide whether something is urgent, and it does not tell you what to do. It organises what you tell it, and you check everything before it is saved.

Never rely on Rarevia in an emergency or to decide whether to seek care. If you're worried about immediate safety, contact your local emergency services or your care team. Rarevia is not monitored, and nobody at Rarevia sees what you write.

3. Who can use Rarevia

You must be 18 or over to hold a Rarevia account. Rarevia is for adults: parents and carers recording information about a child in their care, and adult patients recording their own.

If you're recording information about a child, you confirm you hold parental responsibility for that child, or have the authority of someone who does. If that changes, a separation, a change in who cares for the child, please get in touch, because it may change what we can do for you. Children do not have Rarevia accounts.

4. Your account, your key, and your recovery code

You'll create an account with an email address and a password. Keep the password to yourself and don't let anyone else use your account.

This part matters more than anything else in these terms. Rarevia locks everything you record with a key made from your own credentials. We never receive that key. This is why we can't read your records, and it's also why, if you lose your password and your recovery code, nobody can recover your records.

When you set up your account we'll give you a recovery code and ask you to save it somewhere secure. Exporting your summary from time to time is a sensible second safety net.

5. What we ask of you

• Record information about yourself, or about a child in your care. Please don't record detailed information about other people who haven't agreed to it.

• Don't use Rarevia to do anything unlawful, or to try to break, overload, or reverse engineer it.

• Don't share your account with someone else. (Sharing with other carers is on our roadmap; it isn't here yet.)

• If you spot something wrong or broken, please tell us. During the early stage especially, that's genuinely helpful.

6. What we're responsible for, and what we're not

What we intend to be responsible for: providing the service with reasonable care and skill; protecting your information as described in the Privacy Notice; being honest about what Rarevia does.

What we don't take responsibility for: clinical decisions, which are always between you and your care team; the accuracy of what you record; records that become unrecoverable because a password and recovery code were both lost; interruptions caused by things outside our control.

7. Ending your account, and what happens if we stop

You can stop using Rarevia at any time. Deleting everything in the app removes your records from your device and from our storage; closing your account removes your account details within 30 days.

If Rarevia ever has to shut down, we commit to telling account holders at least 90 days beforehand and keeping export working for that whole period, so no family loses their record because a company ended. We think you're entitled to that promise in writing, which is why it's here.

We may suspend or close an account that's being used unlawfully or in a way that harms others, and we'll explain why unless we're legally unable to.

8. Changes to these terms

If we change these terms that could materially affect how your information is handled, we'll update the Privacy Notice first and ask for your agreement again where the law requires it.

9. Law and disputes

These terms are governed by the law of England and Wales, and the courts of England and Wales have jurisdiction. If you live elsewhere, this doesn't remove the consumer protections you have where you live, or your right to bring a claim locally where the law gives you that right.

If something goes wrong, please email info@rarevia.co.