2024 Bionews Patient Survey:

Living with Rare Disease

Bionews’ inaugural “Living with Rare Disease” survey became the largest ever conducted in this space, garnering over 5,000 completed patient surveys.

This report offers invaluable insights into patients’ journeys through diagnosis, treatment, and daily life. By amplifying their voices, we aim to empower the rare disease community with better resources, support, and advocacy.

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    Key Takeaways

    Diagnosed patients had an average diagnosis time of 9 years

    40% of patients are taking 6+ medications, with an average of 5.4 medications overall

    22% of patients are dissatisfied with their current comprehensive treatment plan

    67% of patients used online resources to aid in their diagnosis