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.
Read MoreComment Letter on IPPS from National MPS Society→
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Read comments from the National MPS Society on IPPS urging making access to treatment for patients with rare diseases a priority.
Read MoreProposed adaptation of the ICER value framework for the assessment of treatments for ultra-rare conditions
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Explore the ICER value framework which presents a set of proposed adaptations to the ICER value assessment framework when the topic under review is a treatment for an “ultra-rare” condition.
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