Terms of use.

About these terms

These terms cover your use of purasyndrome.app, the PURA Family Directory (“we”, “us”). They're written in plain English. By using the site you agree to them; if you don't agree, please don't use the site. Our privacy notice explains how we handle personal data.

Information only, not medical advice

Everything on this site is general information. It is not medical, legal, financial or benefits advice, and it isn't a substitute for advice from professionals who know you or your child. Always talk to your own doctors and therapists before making decisions about care. In an emergency, call 999. See our medical disclaimer.

Listings aren't endorsements

We list organisations and services that may be useful to families affected by PURA syndrome. A listing is not a recommendation or endorsement, and we don't assess clinical quality, safety or outcomes. The “PURA-experienced” badge only means a provider has publicly said it has experience with PURA syndrome, and we link to that evidence.

Providers are responsible for their own services, prices, decisions and websites. Please check details directly with them before you rely on anything.

Accuracy

We check every listing against its official source and show when we last checked it, as set out in our editorial policy. Even so, services and rules change, so we can't promise that everything is complete, accurate or up to date at every moment. If you spot a mistake, please tell us.

Sponsorship and featured listings

Some spaces and listings may be sponsored or featured. They are always clearly labelled, and paying never affects badges, guides or research summaries. Our sponsorship policy sets out who we will and won't accept.

Using our forms

You're welcome to use our forms to contact us, suggest providers, report corrections and submit events. When you do, you confirm that what you send is accurate as far as you know and that you're allowed to share it. Please:

• don't include health information about yourself or anyone else;
• don't send anything unlawful, abusive, misleading or promotional spam;
• don't try to overload, break or get round the site's security.

We decide what to publish. We may check, edit, shorten, decline or later remove any submission, and we don't have to give a reason. We never publish your name or email address.

Our content

The text, guides, checklists, design and the way the directory is put together belong to us. You're welcome to read and print pages for your own family's use, print checklists and the care pack, and share links to any page. Please don't copy large parts of the site or republish it elsewhere without asking. Organisation names and logos belong to their owners.

Links to other websites

We link to other organisations' websites so you can check information at the source. We aren't responsible for their content, availability or privacy practices.

Availability and changes

The site is free and provided “as is”. We try to keep it running smoothly but can't promise it will always be available or error-free. We may change, pause or remove any part of it at any time.

Our liability

We are not liable for any loss or damage arising from your use of the site or from relying on its content, or for the services, decisions or websites of anyone we list or link to. Nothing in these terms limits or excludes liability that can't be limited or excluded by law, such as liability for death or personal injury caused by negligence or for fraud, and nothing affects your legal rights as a consumer.

Changes to these terms

We may update these terms from time to time. The date at the top shows when they last changed. This version was last updated on 3 November 2026.

Governing law

These terms are governed by the law of England and Wales, and the courts of England and Wales can deal with any dispute. If you live in Scotland, you can choose to have the law of Scotland apply and bring proceedings in the Scottish courts. If you live in Northern Ireland, you can bring proceedings in Northern Ireland. Wherever you live in the UK, the consumer protections of your own nation still apply.

Contact

Questions about these terms? Contact us, email hello@purasyndrome.app or write to PURA Family Directory, Unit 174904, PO Box 7169, Poole, BH15 9EL, United Kingdom.