Editorial & listing policy

What we list

We list organisations and services relevant to families affected by PURA syndrome, with a UK focus. Every entry must have an official source, such as the provider's own website, a government or NHS page, or a professional register. We record the source link and the date we last checked it.

What we never list

We never list anyone selling unproven treatments, "cures" or anything that claims to treat PURA syndrome itself, and we never list services that discourage families from following medical advice.

The PURA-experienced badge

We give this badge only where a provider publicly states experience with PURA syndrome, for example on its website, an NHS profile or a conference programme. We link to that evidence on the listing. The badge cannot be bought, and sponsors and featured listings have no influence over it. The separate "PURA-specific" label marks organisations dedicated to PURA.

Ordering

Within each category, labelled sponsors and featured listings may appear first, followed by PURA-specific and PURA-experienced entries, then the rest in alphabetical order.

Keeping it current

We aim to recheck every listing at least every six months. Families and providers can suggest corrections. Suggestions are verified before publication.