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May 2021

The future of rare diseases: Leaving no one behind!


Although great progress has been made over the last decade to improve the lives of people living with rare diseases, there remains a high level of unmet needs. The Rare 2030 survey aimed to collect rare disease patients’ perspectives on the future of rare diseases to contribute to shaping the Rare 2030 recommendations. The survey shows that a holistic approach to rare diseases is needed, including research, diagnosis, treatment and care, and capitalising on new technological opportunities. Such policies need to be integrated in a new European framework on rare diseases by 2023 to guide National Plans for Rare Diseases and ensure that no one living with a rare disease is left behind.