We ask today that this Committee consider the creation of one intramural research and diagnostic center for the study of rare diseases. Because rare disease patients are particularly impacted by the cost of diagnosis, treatment and ancillary support services that can reduce a family to poverty, and because patients must often travel long distances to academic hospitals to see the few specialists who work on their particular disease, we also ask that this Committee consider the creation of four regional extramural diagnostic and research centers to expand patient outreach activities and facilitate the development of post-doctoral training fellowships. Mr. Chairman and members of this Subcommittee, we deeply appreciate Congress' commitment to increase research funding for the NIH by 50 percent over the next five years because many have benefited from the groundbreaking work already being done today. Appropriating just one dollar for each rare disease patient in America who is suffering with a rare disease, rather than the current funding level of less than ten cents, is a win-win situation. Patients win when their symptoms are alleviated or cured.
Families win when their loved ones no longer suffer.
Society, as a whole, wins when patients are able to return to school or work to become productive tax-paying citizens. Pharmaceutical and biotechnology companies win when they are able to develop new therapeutic products. The scientific community wins when the knowledge they gain can be applied to more prevalent diseases. And, finally, the government wins when the drain on healthcare dollars is minimized. We understand health through the observation of illness, and the more illnesses we survey, the more we are likely to learn.