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About and governance

About MPS Bio and how this site is governed

MPS Bio publishes governed information and signposting about Hurler syndrome. This section states who publishes the site, what it does and does not do, and how what you read here is produced, checked and corrected.

Regional applicability: Applies to the United Kingdom

Version and status

Version
1.0
Status
Owner-approved current version
Approved
Applies to
United Kingdom
Changes
Recorded in the correction log

In this section

01Editorial and evidence policyEvery page states what it is based on, when it was reviewed, and where the evidence ends. Clinical content is only marked approved by an assigned qualified human reviewer.02Funding and conflicts of interestThis page will state how the site is funded and what interests could influence it. The disclosures themselves have not yet been approved, so none is made here.03CorrectionsIf something here is wrong, tell us. We record what changed and why, we date the correction on the page it affects, and we list it below. We do not edit quietly.04Accessibility statementThis site targets WCAG 2.2 level AA. It is built to be accessible rather than remediated by an overlay, and the display controls supplement that work rather than standing in for it.05PrivacyThis build collects nothing. There are no analytics, no cookies set by this site, no accounts, and the contact form neither sends nor stores anything.06Legal information and imprintThis site provides general information and signposting. It does not provide medical advice, diagnosis or treatment, and it is not a substitute for your clinical team.

This site is published by MPS Bio. It publishes governed information and trusted signposting about Hurler syndrome (severe MPS I, MPS I-H) for families, adults living with the condition, healthcare professionals and researchers.

It is an information service and nothing else. It does not fundraise, campaign, provide clinical care, hold a patient record, or replace an established MPS organisation. Where another organisation is better placed to help, this site says so and points you there.

Who is accountable

Editorial responsibility sits with MPS Bio as publisher. Accountability for each part of the work is held by role, and the roles are stated here rather than filled with names.

Why we do not name individuals

We publish the review process and the sources, not the names of the people who carry out the review. Editorial responsibility sits with MPS Bio as publisher, and accountability is stated by role. This applies to page content, metadata, structured data, downloads and release notes alike.

What MPS Bio can help with

  • Where to start looking for information
  • Which established organisations cover a particular country or topic
  • How specialist metabolic care is generally organised
  • Reporting an error, a broken link or an accessibility barrier
  • Questions about how this site is governed

What MPS Bio cannot help with

  • Anything about an individual's diagnosis, symptoms or treatment
  • Second opinions, or comment on advice given by a clinical team
  • Urgent or emergency situations
  • Arranging referrals, appointments or funding
Please do not send medical details

We cannot review symptoms, test results, images or treatment plans, and we cannot give advice about an individual. Sending those details would mean we held health information we have no basis to hold. Keep enquiries to general questions and to what you are trying to find.

How enquiries are handled

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