Terms and Conditions

1. Agreeing to these terms

By creating an account or using MyPKU, on our website (mypku.co.uk) or in our mobile app, you agree to these Terms and Conditions. If you do not agree, please do not use MyPKU. Our Privacy Policy explains how we use your information.

2. Who we are

MyPKU is operated by MyPKU Ltd, a company registered in England and Wales (Company No. 17196934). Registered office: International House, 55 Longsmith Street, Gloucester, GL1 2HT, United Kingdom.

For questions about these Terms, or to make a complaint, contact us at support@mypku.co.uk or use our online complaints and reports form. We will acknowledge your complaint and reply without undue delay. If we cannot resolve your complaint, we will tell you in writing and say whether we use an alternative dispute resolution provider. Complaints about how we use personal data are covered in our Privacy Policy.

3. Who can use MyPKU

• You must be at least 13 to have your own MyPKU account. If you are 13 to 17, you need a parent or guardian's agreement. By setting up your profile, you confirm this.
• A child under 13 must not have their own account. A parent or guardian can keep their record for them instead (section 6).
• You must be 18 or over to keep a record for someone else or to be an owner or carer of someone else's record, and 16 or over to be a viewer. A young person can take over their own record from 16.
• You must be 18 or over to buy a subscription, based on the date of birth on your profile. Younger people can be covered by a parent's plan (section 8).

4. Your account

• Keep your sign-in details secure. We recommend turning on two-step verification.
• Give accurate information and keep it up to date, especially your date of birth, which we use for the age checks in section 3.
• Do not share your account. If someone else helps with your diary, invite them instead (section 6).
• We may suspend or close your account, or stop you posting in the community, if you break these Terms or misuse MyPKU. Except in serious cases, such as illegal content or a risk to someone's safety, we will tell you why before we do, and you can reply.
• If we close your account and you did not break these Terms, we will refund the unused part of any subscription period you have already paid for. Where we can, we will give you the chance to download your data first: ask at support@mypku.co.uk.
• If you think we got it wrong, email support@mypku.co.uk and a person will review the decision (see section 16).

5. Health information

MyPKU is intended for keeping records and for general information: a diary of blood Phe results and exchanges, and a reference for the protein and estimated Phe content of foods. It is not intended to diagnose, treat or prevent disease, to interpret results, or to recommend a diet, dose or treatment. MyPKU does not make clinical decisions for you, and you should not rely on it alone. Decisions about your diet and treatment should be made with your metabolic team. This does not limit our responsibility under section 11.

• Most Phe figures are estimates worked out from protein, not measurements. Food information comes from product databases, other members and AI, and can be wrong or out of date. Always check the label.
• The AI ingredient tools can make mistakes. They do not replace reading the label or advice from your dietitian.
• The AI summary of blood results is currently switched off. If it is switched on, it will only summarise what has been recorded in the diary. It will not be reviewed by a medical professional and will not be a diagnosis, recommendation or treatment plan.
• If your results are often above or below your clinic's range, or you are unwell, contact your metabolic team. Do not change your diet or protein substitute because of one result. Low results matter too. Blood spot and plasma results can differ by 10 to 30%, so compare like with like.
• If you have PKU and are planning a pregnancy or could be pregnant, contact your metabolic team straight away. High Phe in early pregnancy can harm the baby, and levels need to be in range before conception. A father's PKU does not affect the baby in this way.
• Children's allowances change often as they grow. Always use the latest figures from your child's dietitian, and contact the team if a baby or young child is unwell.

Always talk to your metabolic team or another qualified healthcare professional before changing your PKU management, diet or medication.

6. Keeping a record for someone else

In the app and on the website you can switch between the people whose record you can see. Owners and carers can add, edit and delete entries for the people they look after, and viewers can only read. You can add people, invite others, hand a record over and remove people in the app (People) or on the website (Family). Invitations and hand-overs addressed to your verified email address are also listed in the app.

Adding a person you look after

• You may only add someone if you are their parent or guardian, or someone else with parental responsibility for them. You confirm this, and give consent for us to keep their health information, when you add them. Anyone else who helps, such as a grandparent or childminder, can be invited by you as a carer.
• You are responsible for the record you keep: for having the right to keep it, for keeping it as accurate as you can, and for choosing carefully who you give access to.
• If your circumstances change, for example you no longer have parental responsibility, you must hand the record to someone who does, or remove it.
• Once you have saved a person's date of birth, you cannot change it. If it is wrong, email support@mypku.co.uk and we will correct it.
• If you delete your account, you choose what happens to each person you look after. A child's record can move only to an adult you choose who already has owner or carer access and who accepts it and confirms that they have parental responsibility. Until they do, the record is not moved. A request lapses if it is not accepted within 14 days. You can delete the record instead.

Giving other people access

• The owner of a record can invite people as carers (who can add and correct entries) or viewers (who can only look). Only invite people you trust with the person's health information.
• Invitations and requests are emailed from MyPKU's address and show your community name. You need a verified email address and a date of birth on your profile showing you are 18 or over (16 or over to share your own record). Only invite people you know, and do not choose a community name that could be mistaken for MyPKU, its staff or a clinician. We limit how many we send.
• If you are given access to someone else's record, use it only to help look after that person. Do not copy or pass on their information except to help with their care.
• Anyone can remove their own access at any time, except that a record must always have one owner. The owner can remove anyone else.

Handing a record over

• From 16, a young person can take over the record kept for them. The owner starts the hand-over and the young person completes it from their own account. To accept, they must consent to MyPKU holding the record as their own.
• Once they accept, the record is theirs and everyone else loses access. If they already keep their own MyPKU diary, the history is added to it, and anyone they already share that diary with can see it. This cannot be undone. No Premium subscription or cover is transferred with the record.

When we may step in

If we are told that someone should no longer have access to a child's record (for example after a separation, or for a safeguarding reason), we may review it and remove their access, correct a date of birth, or transfer the record to another adult. We will ask for evidence and will record what we do and why. Contact support@mypku.co.uk to raise a concern.

7. Community and social content

• You own the content you post.
• By posting, you give MyPKU a royalty-free licence to store and show your content to MyPKU members, and to anyone with the link if you turn on sharing for a post. This licence lasts until you delete the content. When you delete your account you can also choose to delete all your posts and comments. If you do not, the text of the ones left stays with your name removed, and this licence continues for them. See our Privacy Policy.
• If you are under 18 you cannot turn on sharing for a post (“anyone with the link”). We use the date of birth on your profile to check this, and if you have not given one we treat you as under 18 for this purpose.
• Photos on posts and profile pictures are stored at web addresses that anyone given the address can open. Do not post photos you would not want seen outside MyPKU.
• Do not post: unlawful content, personal medical advice aimed at other people, content that identifies other people without their permission (including children's health information), spam, or abusive or harmful material.
• We may remove content that breaks these rules. Section 16 explains how we moderate, how to report content and how to complain.

8. Subscriptions and payments

Premium and plans for more than one person

• Premium covers one person. You can add more people to the same plan for an additional monthly charge for each person, up to 8 people in total. The current prices are shown on the subscription page before you pay. If you need more than 8 places, contact support@mypku.co.uk.
• Each person you look after, and each adult with owner or carer access to records in your family, can take a place. Viewers do not take a place. You choose who the plan covers. If more people need a place than your plan has, nobody loses access to a record: the people outside the plan just do not get the Premium features.
• On the website, payment is taken by Stripe and you also agree to Stripe's terms. In the Android app, payment is taken by Google Play under Google's terms. The app currently sells a plan for one person.

Price, renewal and changing the number of people

• The monthly price depends on how many people the plan covers. You choose this when you subscribe.
• To change the number of people on a website subscription, use Manage subscription where that option is shown, or contact support@mypku.co.uk. The new price applies from the date of the change. If you add people, the extra charge for the rest of the current billing period is taken straight away. If you remove people, the unused part is credited against your next bill.
• Otherwise, your subscription renews automatically each month at the same price until you cancel. We will give you at least 30 days' notice of a price increase, and you can cancel before it applies.
• Prices in the Android app are set in Google Play and may differ from the prices on the website.

Cancelling

• 14-day right to cancel: Premium is a service. Under the Consumer Contracts (Information, Cancellation and Additional Charges) Regulations 2013 you can cancel within 14 days of first subscribing and we will refund you in full, within 14 days of hearing from you.
• How to use the 14-day right: For a website subscription, cancel in Manage subscription and email support@mypku.co.uk, or email us saying you want to cancel and be refunded. You can use the model cancellation form below, but you do not have to. For a Google Play subscription, use Google Play's refund request, or email us.
• After you subscribe on the website we email you a confirmation with this information: who we are, what Premium includes, the price and how it changes with the number of people, how renewal and cancellation work, the 14-day right and how to complain.
• How to cancel at any time: For a website subscription, use Manage subscription or email support@mypku.co.uk. For a Google Play subscription, cancel in the Play Store. Cancellation takes effect at the end of the current billing period, and you keep access until then.
• After the first 14 days, we do not refund part of a billing period already used. Google Play purchases also follow Google's refund rules. This does not affect your statutory rights.

When cover for other people ends

• Cover for the people on your plan depends on your subscription. If you cancel, or your payment fails and is not put right, the plan stops covering them when your subscription ends. If you reduce the number of people or change who is covered, the people no longer covered lose Premium features from that change.
• We email each person who loses cover and show them a note in MyPKU. Their records are not affected, and they can buy their own subscription.
• If you are covered by someone else's plan, your Premium features depend on them. You can leave their plan at any time, in the app or on the website.
• Without Premium, the exchange log shows only your last 2 days. Nothing is deleted. The rest shows again if you get Premium again.

Deleting your account

Deleting your MyPKU account cancels any subscription you pay for: a website subscription ends straight away, and a Google Play subscription will not renew. Your plan stops covering anyone else at once. We do not refund the rest of the billing period, because the account it was for no longer exists. This does not affect your statutory rights.

9. Shop purchases and physical goods

Physical products sold through the MyPKU shop are fulfilled by us and payment is processed by Stripe. By placing an order you also agree to Stripe's Terms of Service. Some products link to another seller instead. Those purchases are made with that seller on their terms.

• All prices include any taxes that apply. Any shipping charge is shown at checkout before you pay.
• You have a legal right to cancel your order within 14 days of receiving the goods under the Consumer Contracts (Information, Cancellation and Additional Charges) Regulations 2013. See our Returns & Refunds policy for full details.
• Goods are covered by your rights under the Consumer Rights Act 2015: they must be of satisfactory quality, fit for purpose, and as described.
• Delivery times and destinations are set out in our Shipping & Delivery policy.

10. Intellectual property

MyPKU and its content (apart from content posted by members) belong to us. You may not copy, change or distribute our platform or branding without our written permission.

11. Our responsibility to you

We are responsible for loss or damage you suffer that is a foreseeable result of our breaking these Terms or failing to use reasonable care and skill. We are not responsible for loss that was not foreseeable, or for business losses.

We do not exclude or limit our liability for death or personal injury caused by our negligence, for fraud, for breach of your legal rights in relation to goods, services or digital content we supply, or for breach of data protection law, or for damage to your device or digital content caused by digital content we supply (Consumer Rights Act 2015, section 46). Otherwise, our total liability to you is limited to the greater of £100 or the amount you paid us in the 12 months before the claim.

In short: if we get something wrong, you can ask for a repair, a price reduction or a refund as the law allows. Nothing in these Terms takes away your statutory rights.

12. Changes to the service

We may change or stop a feature for a good reason: to keep MyPKU safe and secure, to follow the law, because a supplier we rely on changes, to fix errors, or to improve the service. We will give reasonable notice of important changes. If a change makes things materially worse for you, we will give at least 30 days' notice. You can then cancel before it takes effect, and we will refund any prepaid time you have not used.

13. Governing law

These Terms are governed by the laws of England and Wales. Any disputes will be dealt with by the courts of England and Wales. If you live in Scotland or Northern Ireland, you can also bring proceedings in the courts there.

14. The MyPKU app

We will supply the app with reasonable care and skill. Your legal rights are set out in section 11. MyPKU is intended for keeping records and for general information: a diary of blood Phe results and exchanges, and a reference for the protein and estimated Phe content of foods. It is not intended to diagnose, treat or prevent disease, to interpret results, or to recommend a diet, dose or treatment. Always ask your healthcare team about clinical decisions.

If you download the app from an app store, your use is also subject to that store’s terms. Where an app store requires it (for example Apple’s standard licensed application end user licence agreement), that agreement also applies. The app store is not responsible for the app or for supporting it; we provide support.

15. Changes to these Terms

We will tell you about important changes by email or in MyPKU before they take effect, and at least 30 days before any change that is materially worse for you (section 12). If you do not agree with a change, you can cancel and delete your account before it takes effect.

16. Keeping the community safe

The community feed lets members post to each other. It is open to members aged 13 and over. MyPKU has no private messages between members.

• How we moderate. Photos are checked automatically by an AI model before they are published, for unsafe content such as nudity, violence, self-harm or hate symbols. Moderators, who are people, review posts and comments that are reported to us and can remove content or stop a member posting.
• How to report. Anyone can report content, including people without an account. Use our online reports form, or email support@mypku.co.uk with a link to the post or comment. In the app, choose Report on a post or comment to open the form. Reports of illegal content, or of content that could harm a child, are looked at first.
• If we remove something or stop you posting. We will tell you why, except in serious cases. To complain, email support@mypku.co.uk and say which decision you are complaining about. A person who was not involved in the original decision will review it and reply to you. If we got it wrong, we will put it right. You can also complain if you think we are not meeting our online safety duties, about our automated photo checks, or about how we check age, using our online complaints form or the same email address.
• What not to post. Do not post content that encourages suicide, self-harm or eating disorders. If you are struggling, you can call Samaritans free on 116 123, any time.
• How we protect children. Members must be 13 or over. Posts are visible only to signed-in members unless the author shares them, and members under 18 cannot share a post outside MyPKU. We do not show advertising. Please do not post children's health information or photos of other people's children.

17. Model cancellation form

Use this form only if you want to cancel a Premium subscription bought on our website or in our Android app within 14 days (section 8). You do not have to use it: any clear statement that you want to cancel is enough. Complete it and email it to support@mypku.co.uk.

To MyPKU Ltd, International House, 55 Longsmith Street, Gloucester, GL1 2HT, United Kingdom, support@mypku.co.uk:

I hereby give notice that I cancel my contract for the supply of the following service: MyPKU Premium subscription.

Subscribed on: [date]

Name: [your name]

Address: [your address]

Signature (only if this form is on paper): [signature]

Date: [date]