| 1 | 1 | | H.R. No. 443 |
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| 2 | 2 | | |
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| 3 | 3 | | |
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| 4 | 4 | | R E S O L U T I O N |
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| 5 | 5 | | WHEREAS, There are nearly 10,000 known diseases and |
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| 6 | 6 | | conditions that are considered rare by medical authorities in the |
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| 7 | 7 | | United States, and each year, thousands of Texans are among those |
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| 8 | 8 | | whose lives are changed by these diseases; and |
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| 9 | 9 | | WHEREAS, A rare disease is defined as one that affects fewer |
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| 10 | 10 | | than 200,000 people, but even though a specific disease may afflict |
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| 11 | 11 | | only a small number of sufferers, such conditions, as a group, |
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| 12 | 12 | | affect almost 30 million Americans, or nearly one in 10 people in |
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| 13 | 13 | | our nation; and |
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| 14 | 14 | | WHEREAS, Many rare diseases are serious and debilitating, |
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| 15 | 15 | | with a significant impact on the lives of those affected and their |
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| 16 | 16 | | families, and approximately 95 percent of rare diseases have no |
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| 17 | 17 | | FDA-approved treatment; and |
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| 18 | 18 | | WHEREAS, The National Economic Burden of Rare Disease Study |
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| 19 | 19 | | in the United States estimated that the overall economic burden of |
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| 20 | 20 | | rare diseases in 2019 exceeded $966 billion; and |
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| 21 | 21 | | WHEREAS, Individuals and families who face a rare disease |
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| 22 | 22 | | often experience a sense of isolation, difficulty in getting an |
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| 23 | 23 | | accurate and timely diagnosis, few treatment options, and problems |
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| 24 | 24 | | in receiving reimbursement for treatment; moreover, those who are |
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| 25 | 25 | | diagnosed with a lesser known disorder often find that they must |
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| 26 | 26 | | bear the lion's share of the responsibility for raising awareness |
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| 27 | 27 | | as well as for raising funds for research toward a possible |
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| 28 | 28 | | treatment or cure; and |
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| 29 | 29 | | WHEREAS, Thousands of patients, family members, friends, |
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| 30 | 30 | | co-workers, medical professionals, researchers, government |
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| 31 | 31 | | officials, and companies developing treatments are pleased to join |
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| 32 | 32 | | together with patient advocacy organizations like The National |
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| 33 | 33 | | Organization for Rare Disorders (NORD), EveryLife Foundation for |
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| 34 | 34 | | Rare Diseases, and the Texas Rare Alliance as part of a nationwide |
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| 35 | 35 | | observance of Rare Disease Day to advocate for continued research |
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| 36 | 36 | | and access to diagnosis and treatment; now, therefore, be it |
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| 37 | 37 | | RESOLVED, That the House of Representatives of the 88th Texas |
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| 38 | 38 | | Legislature hereby recognize February 28, 2023, as Rare Disease Day |
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| 39 | 39 | | and encourage all Texans to learn more about this matter of serious |
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| 40 | 40 | | concern. |
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| 41 | 41 | | Kuempel |
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| 42 | 42 | | ______________________________ |
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| 43 | 43 | | Speaker of the House |
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| 44 | 44 | | I certify that H.R. No. 443 was adopted by the House on March |
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| 45 | 45 | | 16, 2023, by a non-record vote. |
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| 46 | 46 | | ______________________________ |
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| 47 | 47 | | Chief Clerk of the House |
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