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R E S O L U T I O N
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WHEREAS, There are nearly 7,000 diseases and conditions that |
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are considered rare by medical authorities in the United States, |
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and each year, thousands of Texans are among those whose lives are |
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changed by these diseases; and |
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WHEREAS, A rare disease is defined as one that affects fewer |
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than 200,000 people, but even though a specific disease may afflict |
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only a small number of sufferers, as a group such conditions affect |
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almost 30 million Americans, or nearly one in 10 people in our |
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nation; and |
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WHEREAS, Many rare diseases are serious and debilitating, |
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with a significant impact on the lives of those affected and their |
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families, and more than 15 million Americans have a disease for |
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which there is no specific treatment; and |
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WHEREAS, Individuals and families who face a rare disease |
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often experience a sense of isolation, difficulty in getting an |
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accurate and timely diagnosis, few treatment options, and problems |
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in receiving reimbursement for treatment; moreover, those who are |
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diagnosed with a lesser known disorder often find that they must |
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bear the lion's share of the responsibility for raising awareness |
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as well as for raising funds for research toward a possible |
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treatment or cure; and |
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WHEREAS, The National Organization for Rare Disorders (NORD) |
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is sponsoring a nationwide observance of Rare Disease Day, when |
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patients, medical professionals, researchers, government |
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officials, and companies developing treatments can join together to |
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focus attention on rare diseases as a public health issue; now, |
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therefore, be it |
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RESOLVED, That the House of Representatives of the 83rd Texas |
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Legislature hereby recognize February 28, 2013, as Rare Disease Day |
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and call on all Texans to learn more about this matter of serious |
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concern. |