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R E S O L U T I O N
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WHEREAS, There are nearly 10,000 known diseases and |
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conditions that are considered rare by medical authorities in the |
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United States, and each year, thousands of Texans are among those |
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whose lives are 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, such conditions, as a group, |
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affect almost 30 million Americans, or nearly one in 10 people in |
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our 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 approximately 95 percent of rare diseases have no |
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FDA-approved treatment; and |
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WHEREAS, The National Economic Burden of Rare Disease Study |
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in the United States estimated that the overall economic burden of |
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rare diseases in 2019 exceeded $966 billion; 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, Thousands of patients, family members, friends, |
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co-workers, medical professionals, researchers, government |
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officials, and companies developing treatments are pleased to join |
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together with patient advocacy organizations like The National |
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Organization for Rare Disorders (NORD), EveryLife Foundation for |
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Rare Diseases, and the Texas Rare Alliance as part of a nationwide |
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observance of Rare Disease Day to advocate for continued research |
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and access to diagnosis and treatment; now, therefore, be it |
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RESOLVED, That the House of Representatives of the 88th Texas |
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Legislature hereby recognize February 28, 2023, as Rare Disease Day |
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and encourage all Texans to learn more about this matter of serious |
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concern. |