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From Isolation to Infrastructure – The Origins of Rare Disease Networks (blog 1/5)

Across the world, an estimated 300 to 400 million people live with a rare disease. Yet for most of the twentieth century, these individuals lived in near-total isolation – medically, scientifically, and politically. No treatments, no dedicated research programmes, and no networks to connect the at times handful of patients and clinicians who shared the […]

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