California 2023-2024 Regular Session

California Assembly Bill AR16 Compare Versions

Only one version of the bill is available at this time.

Old	New	Differences
1	1	CALIFORNIA LEGISLATURE 20232024 REGULAR SESSION House Resolution No. 16Introduced by Assembly Member MaienscheinFebruary 17, 2023 Relative to Rare Disease Day.LEGISLATIVE COUNSEL'S DIGESTHR 16, as introduced, Maienschein. Digest KeyBill TextWHEREAS, There are nearly 7,000 diseases and conditions that are considered rare, each affecting fewer than 200,000 Americans, according to the National Institutes of Health; andWHEREAS, Of these nearly 7,000 rare diseases, more than 80 percent are considered ultrarare, affecting less than a few thousand Americans; andWHEREAS, While each of these diseases may affect a small number of people, rare diseases as a group affect almost 30 million Americans; and WHEREAS, Many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected; andWHEREAS, While more than 600 drugs and biologics have been approved for the treatment of rare diseases, according to the United States Food and Drug Administration, millions of Americans still have rare diseases for which there are no approved treatments; andWHEREAS, 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 Gehrigs disease, and are 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; andWHEREAS, Millions of Californians are among those affected by rare diseases because nearly one in 10 Americans has a rare disease; andWHEREAS, The National Organization for Rare Disorders is organizing a nationwide observance of Rare Disease Day on February 28, 2023; and WHEREAS, Thousands of patients, caregivers, medical professionals, researchers, companies developing orphan products to treat people with rare diseases, and others in the State of California will participate in that observance; now, therefore, be itResolved by the Assembly of the State of California, That the Assembly hereby proclaims February 28, 2023, as Rare Disease Day in California; and be it furtherResolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the author for appropriate distribution.
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3	3	CALIFORNIA LEGISLATURE 20232024 REGULAR SESSION House Resolution No. 16Introduced by Assembly Member MaienscheinFebruary 17, 2023 Relative to Rare Disease Day.LEGISLATIVE COUNSEL'S DIGESTHR 16, as introduced, Maienschein. Digest Key
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9	9	CALIFORNIA LEGISLATURE 20232024 REGULAR SESSION
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11	11	House Resolution
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13	13	No. 16
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15	15	Introduced by Assembly Member MaienscheinFebruary 17, 2023
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17	17	Introduced by Assembly Member Maienschein
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20	20	Relative to Rare Disease Day.
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22	22	LEGISLATIVE COUNSEL'S DIGEST
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24	24	## LEGISLATIVE COUNSEL'S DIGEST
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26	26	HR 16, as introduced, Maienschein.
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30	30	## Digest Key
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32	32	## Bill Text
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34	34	WHEREAS, There are nearly 7,000 diseases and conditions that are considered rare, each affecting fewer than 200,000 Americans, according to the National Institutes of Health; and
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36	36	WHEREAS, Of these nearly 7,000 rare diseases, more than 80 percent are considered ultrarare, affecting less than a few thousand Americans; and
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38	38	WHEREAS, While each of these diseases may affect a small number of people, rare diseases as a group affect almost 30 million Americans; and
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40	40	WHEREAS, Many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected; and
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42	42	WHEREAS, While more than 600 drugs and biologics have been approved for the treatment of rare diseases, according to the United States Food and Drug Administration, millions of Americans still have rare diseases for which there are no approved treatments; and
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44	44	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
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46	46	WHEREAS, While the public is familiar with some rare diseases, such as Lou Gehrigs disease, and are 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
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48	48	WHEREAS, Millions of Californians are among those affected by rare diseases because nearly one in 10 Americans has a rare disease; and
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50	50	WHEREAS, The National Organization for Rare Disorders is organizing a nationwide observance of Rare Disease Day on February 28, 2023; and
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52	52	WHEREAS, Thousands of patients, caregivers, medical professionals, researchers, companies developing orphan products to treat people with rare diseases, and others in the State of California will participate in that observance; now, therefore, be it
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54	54	Resolved by the Assembly of the State of California, That the Assembly hereby proclaims February 28, 2023, as Rare Disease Day in California; and be it further
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56	56	Resolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the author for appropriate distribution.