The Haystack Project urges the OIG to develop a safe harbor to enable financial assistance from charitable entities, and directly from a manufacturer, so that patients can access the rare disease treatment they need.
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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.
