Enrolled March 14, 2025 Passed IN Senate March 13, 2025 Passed IN Assembly February 24, 2025 CALIFORNIA LEGISLATURE 20252026 REGULAR SESSION Assembly Concurrent Resolution No. 33Introduced by Assembly Member Zbur(Principal coauthor: Assembly Member Dixon)(Principal coauthor: Senator Blakespear)(Coauthors: Assembly Members 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 Gonzlez, 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, and Wilson)February 14, 2025 Relative to Rare Disease Day. LEGISLATIVE COUNSEL'S DIGESTACR 33, Zbur. Rare Disease Day.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.Digest Key Fiscal Committee: NO Bill TextWHEREAS, A rare disease or disorder is a disease or disorder that affects a small number of patients; and WHEREAS, In the United States, a rare disease or disorder affects fewer than 200,000 individuals; and 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 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 WHEREAS, Many rare diseases and disorders are serious and life-threatening; and 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 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 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 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 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 WHEREAS, Supported by Californias 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 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 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 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 WHEREAS, the FDA and the National Institutes of Health support innovative research on the treatment of rare diseases and disorders; and WHEREAS, Rare Disease Day is observed each year on the last day of February; and 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 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 Resolved by the Assembly of the State of California, the Senate thereof concurring, 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 Resolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the author for appropriate distribution.
Enrolled March 14, 2025 Passed IN Senate March 13, 2025 Passed IN Assembly February 24, 2025 CALIFORNIA LEGISLATURE 20252026 REGULAR SESSION Assembly Concurrent Resolution No. 33Introduced by Assembly Member Zbur(Principal coauthor: Assembly Member Dixon)(Principal coauthor: Senator Blakespear)(Coauthors: Assembly Members 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 Gonzlez, 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, and Wilson)February 14, 2025 Relative to Rare Disease Day. LEGISLATIVE COUNSEL'S DIGESTACR 33, Zbur. Rare Disease Day.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.Digest Key Fiscal Committee: NO
Enrolled March 14, 2025 Passed IN Senate March 13, 2025 Passed IN Assembly February 24, 2025
Enrolled March 14, 2025
Passed IN Senate March 13, 2025
Passed IN Assembly February 24, 2025
CALIFORNIA LEGISLATURE 20252026 REGULAR SESSION
Assembly Concurrent Resolution
No. 33
Introduced by Assembly Member Zbur(Principal coauthor: Assembly Member Dixon)(Principal coauthor: Senator Blakespear)(Coauthors: Assembly Members 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 Gonzlez, 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, and Wilson)February 14, 2025
Introduced by Assembly Member Zbur(Principal coauthor: Assembly Member Dixon)(Principal coauthor: Senator Blakespear)(Coauthors: Assembly Members 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 Gonzlez, 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, and Wilson)
February 14, 2025
Relative to Rare Disease Day.
LEGISLATIVE COUNSEL'S DIGEST
## LEGISLATIVE COUNSEL'S DIGEST
ACR 33, Zbur. Rare Disease Day.
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.
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.
## Digest Key
## Bill Text
WHEREAS, A rare disease or disorder is a disease or disorder that affects a small number of patients; and
WHEREAS, In the United States, a rare disease or disorder affects fewer than 200,000 individuals; and
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
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
WHEREAS, Many rare diseases and disorders are serious and life-threatening; and
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
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
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
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
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
WHEREAS, Supported by Californias 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
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
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
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
WHEREAS, the FDA and the National Institutes of Health support innovative research on the treatment of rare diseases and disorders; and
WHEREAS, Rare Disease Day is observed each year on the last day of February; and
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
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
Resolved by the Assembly of the State of California, the Senate thereof concurring, 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
Resolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the author for appropriate distribution.