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Measure ACR 33
Authors Zbur  
Principle Coauthors: Dixon   Blakespear  
Coauthors: Addis   Aguiar-Curry   Ahrens   Alanis   Arambula   Bauer-Kahan   Bennett   Berman   Boerner   Bonta   Calderon   Caloza   Castillo   Chen   Connolly   Davies   DeMaio   Elhawary   Flora   Fong   Gabriel   Gallagher   Garcia   Gipson   Jeff Gonzalez   Mark González   Hadwick   Haney   Harabedian   Hart   Hoover   Irwin   Jackson   Kalra   Lackey   Lee   Lowenthal   Macedo   McKinnor   Nguyen   Ortega   Pacheco   Papan   Patel   Patterson   Pellerin   Petrie-Norris   Quirk-Silva   Ramos   Ransom   Rivas   Celeste Rodriguez   Michelle Rodriguez   Rogers   Blanca Rubio   Sanchez   Schiavo   Schultz   Sharp-Collins   Soria   Stefani   Ta   Tangipa   Valencia   Wallis   Ward   Wicks   Wilson  
Subject Rare Disease Day.
Relating To
Title Relative to Rare Disease Day.
Last Action Dt 2025-03-18
State Chaptered
Status Chaptered
Active? Y
Vote Required None
Appropriation None
Fiscal Committee No
Local Program None
Substantive Changes None
Urgency None
Tax Levy None
Leginfo Link Bill
Actions
2025-03-18     Chaptered by Secretary of State - Res. Chapter 25, Statutes of 2025.
2025-03-18     Enrolled and filed with the Secretary of State at 3:30 p.m.
2025-03-13     Adopted and to Assembly. (Ayes 36. Noes 0. Page 365.)
2025-03-13     In Assembly. Ordered to Engrossing and Enrolling.
2025-03-11     Ordered to special consent calendar.
2025-03-05     From committee: Ordered to third reading.
2025-02-26     In Senate. To Com. on RLS.
2025-02-24     Coauthors revised.
2025-02-24     Adopted and to Senate. (Page 446.)
2025-02-19     From committee: Be adopted. Ordered to Third Reading. (Ayes 10. Noes 0.) (February 18).
2025-02-18     Referred to Com. on RLS.
2025-02-15     From printer.
2025-02-14     Introduced. To print.
Keywords
Tags
Versions
Chaptered     2025-03-18
Enrolled     2025-03-14
Introduced     2025-02-14
Last Version Text 
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		<ns0:AuthorText authorType="LEAD_AUTHOR">Introduced by Assembly Member Zbur</ns0:AuthorText>
		<ns0:AuthorText authorType="PRINCIPAL_COAUTHOR_ORIGINATING">(Principal coauthor: Assembly Member Dixon)</ns0:AuthorText>
		<ns0:AuthorText authorType="PRINCIPAL_COAUTHOR_OPPOSITE">(Principal coauthor: Senator Blakespear)</ns0:AuthorText>
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				<ns0:Name>Michelle Rodriguez</ns0:Name>
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				<ns0:Name>Blanca Rubio</ns0:Name>
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				<ns0:Name>Tangipa</ns0:Name>
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				<ns0:Name>Valencia</ns0:Name>
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				<ns0:Contribution>COAUTHOR</ns0:Contribution>
				<ns0:House>ASSEMBLY</ns0:House>
				<ns0:Name>Wallis</ns0:Name>
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			<ns0:Legislator>
				<ns0:Contribution>COAUTHOR</ns0:Contribution>
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				<ns0:Name>Ward</ns0:Name>
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			<ns0:Legislator>
				<ns0:Contribution>COAUTHOR</ns0:Contribution>
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				<ns0:Name>Wicks</ns0:Name>
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				<ns0:Name>Wilson</ns0:Name>
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		</ns0:Authors>
		<ns0:Title> Relative to Rare Disease Day. </ns0:Title>
		<ns0:RelatingClause>Rare Disease Day</ns0:RelatingClause>
		<ns0:GeneralSubject>
			<ns0:Subject>Rare Disease Day.</ns0:Subject>
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		<ns0:DigestText>
			<html:p>This measure would designate February 28, 2025, as Rare Disease Day and, with respect to rare diseases and disorders, would recognize the importance of improving awareness, encouraging accurate and early diagnosis, and supporting national and global efforts to develop effective treatments, diagnostics, and cures.</html:p>
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			<ns0:FiscalCommittee>NO</ns0:FiscalCommittee>
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		<ns0:Whereas id="id_5DCCB849-BA6A-441C-A8CD-8E4F569515AA">
			<ns0:Content>
				<html:p>WHEREAS, A rare disease or disorder is a disease or disorder that affects a small number of patients; and </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Whereas id="id_41F79F39-49CF-482B-A887-542E2522AF02">
			<ns0:Content>
				<html:p>WHEREAS, In the United States, a rare disease or disorder affects fewer than 200,000 individuals; and </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Whereas id="id_E4B19262-F2FE-4C6C-938C-204FDFB97B94">
			<ns0:Content>
				<html:p>WHEREAS, As of the date of the adoption of this resolution, more than 30,000,000 individuals in the United States are living with at least 1 of the more than 10,000 known rare diseases or disorders; and </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Whereas id="id_961F0062-A7E8-4DE6-80BC-2136375AC7CF">
			<ns0:Content>
				<html:p>WHEREAS, Children with rare diseases or disorders account for a significant portion of the population affected by rare diseases or disorders in the United States; and </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Whereas id="id_B658AE70-9E4A-4B7C-9079-A7558F3FD02D">
			<ns0:Content>
				<html:p>WHEREAS, Many rare diseases and disorders are serious and life-threatening; and </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Whereas id="id_43AF787E-62C2-4C0A-8155-923FFB4564A1">
			<ns0:Content>
				<html:p>WHEREAS, This year marks the 42nd anniversary of the enactment of the federal Orphan Drug Act, a landmark law enabling tremendous advances in the research and treatment of rare diseases and disorders; and </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Whereas id="id_CC7FF918-4A4D-4EED-863B-20B37A0E382A">
			<ns0:Content>
				<html:p>WHEREAS, In 2022, the Center for Drug Evaluation and Research, in the United States Food and Drug Administration (FDA), established the Accelerating Rare disease Cures Program with a vision of speeding and increasing the development of effective and safe treatment options to address the unmet needs of patients with rare diseases; and </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Whereas id="id_303CE2D0-F9BF-4A2D-AFE2-A3C1C098F02F">
			<ns0:Content>
				<html:p>WHEREAS, Congress passed into law, as part of the Consolidated Appropriations Act of 2023 (H.Res. No. 2617), provisions creating the rare disease endpoint advancement pilot program in the FDA to support the development of novel efficacy endpoints to help facilitate the development and timely approval of rare disease treatments; and </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Whereas id="id_DD461CF1-B51D-42DA-87BC-144A81743AE4">
			<ns0:Content>
				<html:p>WHEREAS, In 2024, California established the Jacqueline Marie Zbur Rare Disease Advisory Council to raise awareness of rare diseases and to provide recommendations to the Legislature to improve access to care; and </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Whereas id="id_27674C93-3E09-4987-B51B-78BCA003E0A5">
			<ns0:Content>
				<html:p>WHEREAS, Although the FDA has approved more than 1,100 drugs and biological products for an orphan indication for the treatment of a rare disease or disorder, approximately 90 percent of rare diseases do not have a treatment approved by the FDA for their condition; and </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Whereas id="id_FE364C85-B52D-453B-BC53-AE3C32F7E879">
			<ns0:Content>
				<html:p>WHEREAS, Supported by California’s world-renowned research and education institutions, the California life sciences sector has led the way by developing innovative technologies and treatments. Nearly 200 rare disease drugs and treatments originated in California through a patient-first approach; and </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Whereas id="id_F45E5A8E-0384-464B-84CC-B1FB62073259">
			<ns0:Content>
				<html:p>WHEREAS, Limited treatment options and financing life-altering and lifesaving treatments can be challenging for individuals with rare diseases or disorders and their families; and </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Whereas id="id_5DD4D87D-5B50-4AD0-90A8-537919B3CF26">
			<ns0:Content>
				<html:p>WHEREAS, Rare diseases and disorders include sickle cell anemia, spinal muscular atrophy, amyotrophic lateral sclerosis (ALS), thyroid eye disease, myotonic dystrophy, t-cell prolymphocytic leukemia, Sanfilippo syndrome, microtia, cystinosis, meatal atresia, and conductive deafness; and </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Whereas id="id_88003A28-BCAA-4A95-BED3-7EDE6319B34D">
			<ns0:Content>
				<html:p>WHEREAS, Individuals with rare diseases or disorders can experience difficulty in obtaining accurate diagnoses and finding physicians or treatment centers with expertise in their rare disease or disorder; and </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Whereas id="id_F54A4794-20A2-4FA4-8F99-8F124085FF60">
			<ns0:Content>
				<html:p>WHEREAS, the FDA and the National Institutes of Health support innovative research on the treatment of rare diseases and disorders; and </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Whereas id="id_D7F21DB9-BBDA-4C8B-A617-42D7D354DF1F">
			<ns0:Content>
				<html:p>WHEREAS, Rare Disease Day is observed each year on the last day of February; and </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Whereas id="id_13DC432B-35BA-466B-8B6B-F8DAD671274E">
			<ns0:Content>
				<html:p>WHEREAS, Rare Disease Day is a global event that was first observed in the United States on February 28, 2009, and has grown to be observed by over 100 countries in 2024; and </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Whereas id="id_A921CC5E-4FED-4287-B611-5C29013CF670">
			<ns0:Content>
				<html:p>WHEREAS, Rare Disease Day is expected to be observed globally for years to come, providing hope and information for rare disease and disorder patients around the world; now, therefore, be it </html:p>
			</ns0:Content>
		</ns0:Whereas>
		<ns0:Resolved id="id_3F509AC6-A2AB-4CBE-A171-ADE46646D6A1">
			<ns0:Content>
				<html:p>
					<html:i>Resolved by the Assembly of the State of California, the Senate thereof concurring,</html:i>
					 That the Legislature designates February 28, 2025, as Rare Disease Day and, with respect to rare diseases and disorders, recognizes the importance of improving awareness, encouraging accurate and early diagnosis, and supporting national and global efforts to develop effective treatments, diagnostics, and cures; and be it further 
				</html:p>
			</ns0:Content>
		</ns0:Resolved>
		<ns0:Resolved id="id_0C892B3B-2FAF-4E78-B1F0-190A3825486A">
			<ns0:Content>
				<html:p>
					<html:i>Resolved,</html:i>
					 That the Chief Clerk of the Assembly transmit copies of this resolution to the author for appropriate distribution. 
				</html:p>
			</ns0:Content>
		</ns0:Resolved>
	</ns0:Resolution>
</ns0:MeasureDoc>
Last Version Text Digest This measure would designate February 28, 2025, as Rare Disease Day and, with respect to rare diseases and disorders, would recognize the importance of improving awareness, encouraging accurate and early diagnosis, and supporting national and global efforts to develop effective treatments, diagnostics, and cures.