The HPS Network is one of more than 220 patient organizations urging Congress to pass the Orphan Products Extension Now Accelerating Cures and Treatments Act (OPEN Act). This legislation would offer incentives to pharmaceutical companies to repurpose existing drugs to treat often life-threatening rare diseases by giving them an extra six months exclusivity for an FDA approved drug or biological product when it is FDA approved for a new indication. It is estimated the legislation could expand the number of FDA approved treatments for rare diseases by hundreds. Currently, many treatments for rare diseases are off label and thus can’t always be covered by insurance. To tell your Congressional representatives to support this legislation (H.R. 1223), go to: http://rareadvocates.org/everylife-foundation-urges-advocates-members-congress-co-sponsor-open-act/

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