Article

Exploring Needs and Priorities in Digital Health Management for Rare Disease Patients and their Caregivers: A Mixed-Methods Study

2026-01-30

Abstract excerpt

Rare diseases affect millions worldwide and are associated with long diagnostic delays, limited access to treatments, and substantial challenges in daily care and coordination. Digital health technologies, including mobile apps, telehealth, and data-sharing platforms, offer opportunities to improve care and quality of life for people living with rare diseases. As these tools rapidly expand, this study examines the...

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Literature Corpus work: f601fc94-aaa4-5b4b-ace8-c59d6cf77799
DOI: 10.64898/2026.01.28.26345095

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