About us

I'm a UK parent of a daughter with PURA syndrome. Finding the right therapists, equipment and support meant hours of searching across dozens of websites. This site gathers that work into one place, so other families can spend less time searching and more time with their children.

Working alongside the PURA foundations

This is an independent site and is not affiliated with the PURA Syndrome Foundation or any other PURA organisation. It is not meant to replace them. We point families to the Foundation, its patient registry and the national PURA groups at every step. The Foundation has said it hopes to build country-by-country resources, and we would love to help with that.

How the site is funded

Listings are free. To cover costs, we may offer clearly labelled sponsorships and featured listings to relevant, ethical providers. See our sponsorship policy. We never accept money from anyone selling unproven treatments or "cures".

Contact

Questions, corrections or ideas: hello@purasyndrome.app. Please don't send health information about your child.