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The quality of digital health is dependent on defined data points reflecting the actual medical and societal situation and register changes when new diagnostics or therapies become available. The life experiences of individuals living with a condition, individually or as a group, are underrepresented in the digitalising world. This narrative review addresses rare conditions as an entity, public health strategies, digital health opportunities, and ethical considerations. The challenge is illustrated by comparing data gathered by manually selected data points with advanced artificial intelligence systems. In this new digital era, we consider the philosopher Kant's notion of noumena: \u201cOnly individuals with rare disabling conditions can genuinely convey the reality of living with those conditions\u201d. In conclusion, there is a pressing demand to embed the needs and experiences of people in all new technologies.<\/jats:p>","DOI":"10.3389\/fdgth.2025.1539841","type":"journal-article","created":{"date-parts":[[2025,7,10]],"date-time":"2025-07-10T05:45:23Z","timestamp":1752126323000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":2,"title":["Rare diseases: ethical challenges in the era of digital health"],"prefix":"10.3389","volume":"7","author":[{"given":"Liesbeth","family":"Siderius","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sahan 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