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Newsletter Summer 2010 Pediatric Rare Disease Community Receives Great News from Capitol Hill
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The Creating Hope Act of 2010, a bipartisan bill, is now making its way through Congress. It proposes an amendment to the Federal Food, Drug, and Cosmetic Act of 2007 in order to improve the priority review voucher incentive program relating to tropical and rare pediatric diseases, such as Batten disease. When the act was passed in 2007, rare pediatric diseases were excluded. The Creating Hope Act of 2010 will stimulate the development of new drugs for children with rare diseases by offering priority review vouchers (PRV) as incentives to pharmaceutical companies in return for allocating resources to this important cause. The Creating Hope Act of 2010 is being supported by Senators Sam Brownback (R-KS), Sherrod Brown (D-OH) and Al Franken (D-MN); advocacy efforts are being led by Nancy Goodman, executive director of Kids v Cancer. Goodman lost her son to a rare pediatric cancer in 2009. You can help ensure the success of this bill and give hope to children with rare diseases by encouraging your local congressmen and congresswomen to support it. Please also spread the word to your friends and family so that they may do the same. This type of legislation is an important piece of the puzzle, because it will help ensure that the groundbreaking research being done in the Batten disease community will make its way out of the lab and into the lives of the children who so desperately need a cure.
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