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| 3 | 4 | | |
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| 4 | 5 | | R E S O L U T I O N |
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| 5 | 6 | | WHEREAS, There are nearly 7,000 diseases and conditions that |
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| 6 | 7 | | are considered rare by medical authorities in the United States, |
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| 7 | 8 | | and each year, thousands of Texans are among those whose lives are |
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| 8 | 9 | | changed by these diseases; and |
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| 9 | 10 | | WHEREAS, A rare disease is defined as one that affects fewer |
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| 10 | 11 | | than 200,000 people, but even though a specific disease may afflict |
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| 11 | 12 | | only a small number of sufferers, such conditions, as a group, |
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| 12 | 13 | | affect almost 30 million Americans, or nearly one in 10 people in |
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| 13 | 14 | | our nation; and |
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| 14 | 15 | | WHEREAS, Many rare diseases are serious and debilitating, |
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| 15 | 16 | | with a significant impact on the lives of those affected and their |
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| 16 | 17 | | families, and more than 15 million Americans have a disease for |
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| 17 | 18 | | which there is no specific treatment; and |
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| 18 | 19 | | WHEREAS, Individuals and families who face a rare disease |
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| 19 | 20 | | often experience a sense of isolation, difficulty in getting an |
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| 20 | 21 | | accurate and timely diagnosis, few treatment options, and problems |
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| 21 | 22 | | in receiving reimbursement for treatment; moreover, those who are |
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| 22 | 23 | | diagnosed with a lesser known disorder often find that they must |
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| 23 | 24 | | bear the lion's share of the responsibility for raising awareness |
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| 24 | 25 | | as well as for raising funds for research toward a possible |
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| 25 | 26 | | treatment or cure; and |
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| 26 | 27 | | WHEREAS, The National Organization for Rare Disorders (NORD) |
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| 27 | 28 | | is sponsoring a nationwide observance of Rare Disease Day, when |
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| 28 | 29 | | patients, medical professionals, researchers, government |
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| 29 | 30 | | officials, and companies developing treatments can join together to |
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| 30 | 31 | | focus attention on rare diseases as a public health issue; now, |
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| 31 | 32 | | therefore, be it |
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| 32 | 33 | | RESOLVED, That the House of Representatives of the 84th Texas |
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| 33 | 34 | | Legislature hereby recognize February 28, 2015, as Rare Disease Day |
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| 34 | 35 | | and encourage all Texans to learn more about this matter of serious |
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| 35 | 36 | | concern. |
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