New Coalition Draws Attention To Plight Of Those With Rare Diseases

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Caduceusby Andrew Kitchenman / NJ Spotlight

New Jersey pharmaceutical companies, healthcare providers and patient advocates are working together – in a newly-formed group called NJ Rare — to solve the vexing challenge of finding treatments for diseases that affect relatively few people and therefore are the focus of less research.

People with rare diseases face a wide range of challenges, including having few in-network doctors who specialize in treating their conditions; waiting for medications approved to treat their conditions; expenses for both treatments and existing drugs, and even waiting years to even receive a diagnosis. )

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