Orphan drugs- developed to treat rare diseases affecting patient populations of fewer than 200,000 people annually - have become a lucrative business opportunity for drug makers. These medications made up almost half of all new drugs approved by the U.S. Food and Drug Administration (FDA) in 2015.
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The Haystack Project is a 501(c)3 nonprofit that brings together patients organizations representing patients suffering from or caring for patients with extremely rare diseases. Our mission is to educate policymakers and other stakeholders about the need for policies that recognize the unique circumstances of extremely rare conditions and treatments and expand incentives critical to ensuring they can reach patients.
