How we create our content

Three layers of content

DiseaseMaps combines three kinds of content, clearly separated on every page:

First-person patient experiences. Answers, stories and map entries written by registered community members living with each condition. They are opinions and lived experience, not medical advice, and they are shown with their author and date.
Medically reviewed summaries. Each top question includes a summary that is drafted with the assistance of AI tools and reviewed against authoritative sources such as the NIH Genetic and Rare Diseases Information Center (GARD), Orphanet and OMIM. The sources used are cited on the page, together with the date of the last update.
Community data. Aggregated, anonymised statistics from our members: where they live (the maps), how they rate their quality of life (SF-36 surveys) and how they answer practical questions about daily life.

We label AI-assisted content as such, and we cite the medical sources used to review it.
We never alter what patients write; we only moderate spam and abusive content.
Pages with no real content for a language are excluded from search engines until they have it.
DiseaseMaps does not provide medical advice. Always consult a healthcare professional about your condition.

If you find an error in any of our pages, or you represent a patient organization and want to collaborate, please contact us. Fale conosco.