LRB-5639/1
CMH:cjs
2023 - 2024 LEGISLATURE
January 26, 2024 - Introduced by Senators Testin,
Agard, Spreitzer, Wirch and
Larson, cosponsored by Representatives Dittrich, Zimmerman, Bare,
Binsfeld, Conley, Drake, Edming, Emerson, Gundrum, Jacobson, Moses,
Murphy, Mursau, Nedweski, O'Connor, Ohnstad, Ratcliff, Shankland,
Sinicki, Stubbs, Subeck, Tittl and Tusler. Referred to Committee on Senate
Organization.
SJR102,1,1
1Relating to: observing February 29, 2024, as Rare Disease Day in Wisconsin.
SJR102,1,42
Whereas, there are nearly 7,000 diseases and conditions considered rare (each
3affecting fewer than 200,000 Americans) in the United States, according to the
4National Institutes of Health (NIH); and
SJR102,1,65
Whereas, while each of these diseases may affect small numbers of people, rare
6diseases as a group affect approximately 25 to 30 million Americans; and
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Whereas, many rare diseases are serious and debilitating conditions that have
8a significant impact on the lives of those affected; and
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Whereas, while more than 800 drugs and biologics have been approved for the
10treatment of rare diseases according to the Food and Drug Administration (FDA),
11millions of Americans still have rare diseases for which there is no approved
12treatment; and
SJR102,1,1513
Whereas, individuals and families affected by rare diseases often experience
14problems such as diagnosis delay, difficulty finding a medical expert, and lack of
15access to treatments or ancillary services; and
SJR102,2,4
1Whereas, while the public is familiar with some rare diseases, many patients
2and families affected by less widely known rare diseases bear a large share of the
3burden of funding research and raising public awareness to support the search for
4treatments; and
SJR102,2,65
Whereas, residents of Wisconsin are among those affected by rare diseases
6because nearly one in 10 Americans have rare diseases; and
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Whereas, the National Organization for Rare Disorders (NORD) is organizing
8a nationwide observance of Rare Disease Day on February 29, 2024; now, therefore,
9be it
SJR102,2,11
10Resolved by the senate, the assembly concurring, That February 29, 2024,
11will be observed as Rare Disease Day in Wisconsin.