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H. 4002
STATUS INFORMATION
House Resolution
Sponsors: Reps. King, Alexander, Allison, Anderson, Atkinson, Bailey, Ballentine, Bamberg, Bannister, Bennett, Bernstein, Blackwell, Bradley, Brawley, Brittain, Bryant, Burns, Bustos, Calhoon, Carter, Caskey, Chumley, Clyburn, Cobb-Hunter, Cogswell, Collins, B. Cox, W. Cox, Crawford, Dabney, Daning, Davis, Dillard, Elliott, Erickson, Felder, Finlay, Forrest, Fry, Gagnon, Garvin, Gatch, Gilliam, Gilliard, Govan, Haddon, Hardee, Hart, Hayes, Henderson-Myers, Henegan, Herbkersman, Hewitt, Hill, Hiott, Hixon, Hosey, Howard, Huggins, Hyde, Jefferson, J.E. Johnson, J.L. Johnson, K.O. Johnson, Jones, Jordan, Kimmons, Kirby, Ligon, Long, Lowe, Lucas, Magnuson, Martin, Matthews, May, McCabe, McCravy, McDaniel, McGarry, McGinnis, McKnight, J. Moore, T. Moore, Morgan, D.C. Moss, V.S. Moss, Murphy, Murray, B. Newton, W. Newton, Nutt, Oremus, Ott, Parks, Pendarvis, Pope, Rivers, Robinson, Rose, Rutherford, Sandifer, Simrill, G.M. Smith, G.R. Smith, M.M. Smith, Stavrinakis, Stringer, Taylor, Tedder, Thayer, Thigpen, Trantham, Weeks, West, Wetmore, Wheeler, White, Whitmire, R. Williams, S. Williams, Willis, Wooten and Yow
Document Path: l:\council\bills\gm\24479zw21.docx
Introduced in the House on March 2, 2021
Adopted by the House on March 2, 2021
Summary: Rare diseases
HISTORY OF LEGISLATIVE ACTIONS
Date Body Action Description with journal page number
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3/2/2021 House Introduced and adopted (House Journal-page 48)
View the latest legislative information at the website
VERSIONS OF THIS BILL
TO DECLARE FEBRUARY 28, 2021, AS "RARE DISEASE DAY" IN THE STATE OF SOUTH CAROLINA IN ORDER TO RAISE AWARENESS FOR THE NEED OF RESEARCH, TREATMENT, AND MEDICAL AVAILABILITY FOR THOSE WHO SUFFER FROM RARE DISEASES.
Whereas, according to the National Institutes of Health (NIH), there are nearly seven thousand diseases and conditions in the United States considered rare, each disease affecting fewer than two hundred thousand Americans; and
Whereas, while each of these diseases may affect small numbers of people, rare diseases as a group affect almost thirty million Americans; and
Whereas, many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected; and
Whereas, while more than eight hundred drugs and biologics have been approved for the treatment of rare diseases according to the Food and Drug Administration (FDA), millions of Americans still have rare diseases for which there is no approved treatment; and
Whereas, individuals and families affected by rare diseases often experience problems such as diagnosis delay, difficulty finding a medical expert, and lack of access to treatments or ancillary services; and
Whereas, while the public is familiar with some rare diseases such as "Lou Gehrig's disease" and is sympathetic to those affected, many patients and families affected by less widely known rare diseases bear a large share of the burden of funding research and raising public awareness to support the search for treatments; and
Whereas, thousands of residents of South Carolina are among those affected by rare diseases since nearly one in ten Americans have rare diseases; and
Whereas, the National Organization for Rare Disorders (NORD) is organizing a nationwide observance of Rare Disease Day on February 28, 2021; and
Whereas, in the State of South Carolina, patients, medical professionals, researchers, government officials, and companies developing orphan products to treat people with rare diseases, and others will participate in that observance. Now, therefore,
Be it resolved by the House of Representatives:
That the members of the South Carolina House of Representatives, by this resolution, declare February 28, 2021, as "Rare Disease Day" in the State of South Carolina in order to raise awareness for the need of research, treatment, and medical availability for those who suffer from rare diseases.
This web page was last updated on
March 2, 2021 at 4:08 PM