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| | SR0167 | | LRB097 11486 KXB 54139 r |
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1 | | SENATE RESOLUTION
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2 | | WHEREAS, Primary immunodeficiency diseases are disorders |
3 | | in which part of the body's immune system is missing or does |
4 | | not function properly; these disorders are caused by intrinsic |
5 | | or genetic defects in the immune system, many of which require |
6 | | chronic replacement therapy consisting of immune globulin |
7 | | administration, gamma interferon, antibiotic therapy, bone |
8 | | marrow/stem cell transplantation, or gene therapy to protect |
9 | | individuals from frequent life-threatening infections and |
10 | | debilitating illnesses; and
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11 | | WHEREAS, The World Health Organization recognizes more |
12 | | than 150 primary immunodeficiency diseases; and
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13 | | WHEREAS, As the public and the medical community know |
14 | | little about primary immunodeficiency diseases that may affect |
15 | | as many as 250,000 people in the United States, there is a |
16 | | delay of 12.4 years from the onset of symptoms to diagnosis, |
17 | | often resulting in permanent functional impairments; and
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18 | | WHEREAS, It is necessary to educate healthcare |
19 | | professionals about primary immunodeficiency diseases to |
20 | | reduce delays in diagnosis and treatment, and widespread public |
21 | | support is needed to understand these disorders, find cures, |
22 | | and provide access to available life-saving therapies; the |