Nonprofits, scientists, governmental organizations, and the rare disease drug development industry have long cited 7,000 as the average number of rare diseases in the world.
But a new analysis shows there are as many as 10,867 rare diseases globally. And that number can be expected to grow as more discoveries are made, according to researchers.
Indeed, when the authors of this analysis included all rare disease subtypes and parent disorders, which represent similar conditions, the numbers on that list rose to 11,792.
Rare-X, a foundation that focuses on decentralizing and de-siloing patient-owned, de-identified data, reached that conclusion in its latest “Power of Being Counted” report. The 35-page document outlines the methodology researchers used to come to that final figure and what patients can do with its updated information.
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Scleroderma Queensland Support Group