Article
A patient advocating for transparent science in rare disease research.
Orphanet journal of rare diseases - 19 Jan 2023
Yang Richard Rui
Abstract excerpt
300 million people live with at least one of 6,000 rare diseases worldwide. However, rare disease research is not always reviewed with scrutiny, making it susceptible to what the author refers to as nontransparent science. Nontransparent science can obscure animal model flaws, misguide medicine regulators and drug developers, delay or frustrate orphan drug development, or waste limited resources for rare disease...
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