Full Text of HR0073 98th General Assembly
HR0073 98TH GENERAL ASSEMBLY |
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| 1 | | HOUSE RESOLUTION
| 2 | | WHEREAS, Rare diseases and disorders are those which affect | 3 | | small patient populations, typically populations smaller than | 4 | | 200,000 individuals in the United States; and
| 5 | | WHEREAS, Nearly 7,000 rare diseases affect millions of | 6 | | Americans and their families; and
| 7 | | WHEREAS, Children with rare genetic diseases account for | 8 | | more than half of the population affected by rare diseases in | 9 | | the United States; and
| 10 | | WHEREAS, Many rare diseases are serious, life-threatening, | 11 | | and lack an effective treatment; and
| 12 | | WHEREAS, Rare diseases and conditions include | 13 | | epidermolysis bullosa, progeria, sickle cell anemia, | 14 | | Tay-Sachs, cystic fibrosis, many childhood cancers, | 15 | | fibrodysplasia ossificans progressiva, and Williams Syndrome; | 16 | | and
| 17 | | WHEREAS, People with rare diseases experience challenges | 18 | | that include difficulty in obtaining an accurate diagnosis, | 19 | | limited treatment options, and difficulty finding physicians | 20 | | or treatment centers with expertise in their disease; and |
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| 1 | | WHEREAS, Great strides have been made in research and | 2 | | treatment for rare diseases as a result of the Orphan Drug Act | 3 | | and other acts of Congress; and
| 4 | | WHEREAS, The United States Food and Drug Administration and | 5 | | National Institutes of Health have established special offices | 6 | | to advocate for rare disease research and treatments; and | 7 | | WHEREAS, The National Organization for Rare Disorders, an | 8 | | organization established in 1983 to provide services to, and | 9 | | advocate on behalf of, patients with rare diseases, was a | 10 | | primary force behind the enactment of the Orphan Drug Act and | 11 | | remains a critical public voice for people with rare diseases; | 12 | | and | 13 | | WHEREAS, The National Organization for Rare Disorders | 14 | | sponsors Rare Disease Day nationwide to increase public | 15 | | awareness of rare diseases; and | 16 | | WHEREAS, Rare Disease Day has become a global event | 17 | | occurring annually on the last day of February; and | 18 | | WHEREAS, Rare Disease Day was observed in the United States | 19 | | for the first time on February 28, 2009; and |
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| 1 | | WHEREAS, Rare Disease Day is anticipated to be observed | 2 | | globally in years to come, providing hope and information for | 3 | | rare disease patients around the world; and | 4 | | WHEREAS, It is fitting that the Illinois House joins in | 5 | | this global observance and takes part in the fight against rare | 6 | | diseases; therefore, be it
| 7 | | RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE | 8 | | NINETY-EIGHTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that | 9 | | we designate the last day of February in 2013 and 2014 as Rare | 10 | | Disease Day in the State of Illinois; and be it further
| 11 | | RESOLVED, That we recognize the importance of improving | 12 | | awareness and encouraging accurate and early diagnosis of rare | 13 | | diseases and disorders; and be it further | 14 | | RESOLVED, That we wholeheartedly support a State, | 15 | | national, and global commitment to improving access to and | 16 | | developing new treatments, diagnostics, and cures for rare | 17 | | diseases and disorders.
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