AB 2613, a bill to establish the first Rare Disease Advisory Council (RDAC) in California, named in memory of Assemblymember Rick Chavez Zbur’s late sister Jacqueline Marie Zbur, marks historic moment for rare disease advocacy
SACRAMENTO, CA — Assemblymember Rick Chavez Zbur (D-Hollywood) announced today that Governor Gavin Newsom has signed AB 2613 into law. The bill, which will take effect on January 1, 2025, establishes the Jacqueline Marie Zbur Rare Disease Advisory Council (RDAC) in California. Named in memory of Assemblymember Zbur's late sister, Jacqueline "Jackie" Marie Zbur, who battled ALS (amyotrophic lateral sclerosis), the RDAC will provide a critical platform for addressing the needs of Californians affected by rare diseases.
AB 2613, sponsored by the National Organization for Rare Disorders (NORD), places California alongside 28 other states that have created similar councils to advise state agencies and the Legislature on rare disease issues. The RDAC will include diverse stakeholders such as patients, caregivers, medical experts, and advocates who will work together to identify gaps in care, recommend improvements to programs like Medi-Cal, and promote research and innovation. The bill also allows for the RDAC to apply for, and accept, funds from the federal government, private foundations, or other sources of funding for rare disease programs.
With over 10,000 rare diseases affecting 1 in 10 Californians, ensuring that state policies meet the needs of this vulnerable population is crucial. Prior to the establishment of the RDAC, critical decisions were often made without the input of those most affected, leading to potential health and economic challenges. AB 2613 ensures that the rare disease community will now have a formal seat at the table in shaping California's policies and legislation.
"AB 2613 is a critical milestone in our commitment to supporting the millions of Californians affected by rare diseases," said Assemblymember Rick Chavez Zbur. "This bill holds deep personal meaning for me, inspired by my late sister Jackie, whose battle with ALS laid bare the devastating flaws in our healthcare system. Before she passed, she made me promise to fight for real change, and this legislation is a powerful step toward fulfilling that promise. It will have a tangible impact on countless families across our state and give the rare disease community the strong, unified voice they deserve. With this bill, we are not just acknowledging the challenges they face—we are taking action to address them head-on. I know my sister is looking down on all of us, knowing her struggle has made a real difference."
"Rare disease impacts 1 in 10 Californians. For Assemblymember Zbur, this is not just a statistic. He knows firsthand the heartbreak and burden rare disease patients and families face as they navigate a complex healthcare system," said NORD CEO Pamela Gavin. "We are immensely grateful to him for championing this legislation and to the Governor for signing it into law and giving the California rare disease community a vital voice in guiding state policy that will help transform and save lives."
AB 2613 will take effect on January 1, 2025.
Assemblymember Rick Chavez Zbur serves as the Democratic Caucus Chair for the California State Assembly and represents the 51st Assembly District, which includes Universal City, Hollywood, Hancock Park, West Hollywood, Beverly Hills, Westwood, West Los Angeles, Santa Monica, and other portions of Los Angeles.
CONTACT: Vienna Montague, (916) 319-2051, Vienna.Montague@asm.ca.gov