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The role of patient organizations in the rare disease ecosystem in India: an interview based study

29 May 2019

Abstract excerpt

BACKGROUND: Rare diseases (RDs) affect a small percentage of the population but can be severely debilitating and life-threatening. Historically, patient groups (PGs) have been the prime movers in raising awareness about these diseases and advocating for national supportive policies. They have also driven relevant research programs. In India too, PGs have made significant contributions to the national RD...

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PMID: 31142331
DOI: 10.1186/s13023-019-1093-6

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