| 1 | 1 | | LRB-5639/1 |
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| 2 | 2 | | CMH:cjs |
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| 3 | 3 | | 2023 - 2024 LEGISLATURE |
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| 4 | 4 | | 2023 SENATE JOINT RESOLUTIO N 102 |
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| 5 | 5 | | January 26, 2024 - Introduced by Senators TESTIN, AGARD, SPREITZER, WIRCH and |
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| 6 | 6 | | LARSON, cosponsored by Representatives DITTRICH, ZIMMERMAN, BARE, |
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| 7 | 7 | | BINSFELD, CONLEY, DRAKE, EDMING, EMERSON, GUNDRUM, JACOBSON, MOSES, |
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| 8 | 8 | | MURPHY, MURSAU, NEDWESKI, O'CONNOR, OHNSTAD, RATCLIFF, SHANKLAND, |
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| 9 | 9 | | SINICKI, STUBBS, SUBECK, TITTL and TUSLER. Referred to Committee on Senate |
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| 10 | 10 | | Organization. |
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| 11 | 11 | | Relating to: observing February 29, 2024, as Rare Disease Day in Wisconsin. |
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| 12 | 12 | | Whereas, there are nearly 7,000 diseases and conditions considered rare (each |
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| 13 | 13 | | affecting fewer than 200,000 Americans) in the United States, according to the |
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| 14 | 14 | | National Institutes of Health (NIH); and |
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| 15 | 15 | | Whereas, while each of these diseases may affect small numbers of people, rare |
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| 16 | 16 | | diseases as a group affect approximately 25 to 30 million Americans; and |
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| 17 | 17 | | Whereas, many rare diseases are serious and debilitating conditions that have |
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| 18 | 18 | | a significant impact on the lives of those affected; and |
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| 19 | 19 | | Whereas, while more than 800 drugs and biologics have been approved for the |
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| 20 | 20 | | treatment of rare diseases according to the Food and Drug Administration (FDA), |
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| 21 | 21 | | millions of Americans still have rare diseases for which there is no approved |
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| 22 | 22 | | treatment; and |
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| 23 | 23 | | Whereas, individuals and families affected by rare diseases often experience |
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| 24 | 24 | | problems such as diagnosis delay, difficulty finding a medical expert, and lack of |
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| 25 | 25 | | access to treatments or ancillary services; and |
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| 40 | 40 | | 15 - 2 - |
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| 41 | 41 | | LRB-5639/1 |
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| 42 | 42 | | CMH:cjs |
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| 43 | 43 | | 2023 - 2024 Legislature |
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| 44 | 44 | | Whereas, while the public is familiar with some rare diseases, many patients |
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| 45 | 45 | | and families affected by less widely known rare diseases bear a large share of the |
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| 46 | 46 | | burden of funding research and raising public awareness to support the search for |
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| 47 | 47 | | treatments; and |
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| 48 | 48 | | Whereas, residents of Wisconsin are among those affected by rare diseases |
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| 49 | 49 | | because nearly one in 10 Americans have rare diseases; and |
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| 50 | 50 | | Whereas, the National Organization for Rare Disorders (NORD) is organizing |
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| 51 | 51 | | a nationwide observance of Rare Disease Day on February 29, 2024; now, therefore, |
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| 52 | 52 | | be it |
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| 53 | 53 | | Resolved by the senate, the assembly concurring, That February 29, 2024, |
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| 54 | 54 | | will be observed as Rare Disease Day in Wisconsin. |
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| 55 | 55 | | (END) |
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