Bill to Create California's First Rare Disease Advisory Council (RDAC) Moves to Governor's Desk

For immediate release:

Wednesday, September 4, 2024

AB 2613, a bill to establish a Rare Disease Advisory Council (RDAC) in California, named in memory of Assemblymember Rick Chavez Zbur's late sister Jacqueline Marie Zbur, heads to the Governor's Desk

SACRAMENTO, CA - Assemblymember Rick Chavez Zbur (D-Hollywood) announced today that AB 2613, a bill to establish the Jacqueline Marie Zbur Rare Disease Advisory Council (RDAC) in California, has passed both houses of the Legislature and now heads to the Governor's Desk. The bill, named in memory of Assemblymember Zbur's sister, Jacqueline "Jackie" Marie Zbur, who battled ALS (amyotrophic lateral sclerosis), will create a critical platform for addressing the needs of Californians affected by rare diseases.

AB 2613, sponsored by the National Organization for Rare Disorders (NORD), will establish a Rare Disease Advisory Council in California, joining 28 other states in creating a dedicated body to advise the Legislature and state agencies on issues impacting the rare disease community. The RDAC will be composed of diverse stakeholders, including patients, caregivers, medical experts, and advocates, who will collaborate to identify gaps in care, recommend improvements to existing programs like Medi-Cal, and promote research and innovation.

With over 10,000 rare diseases affecting 1 in 10 Californians, it is essential that the state's policies reflect the real needs of this vulnerable population. Without a Rare Disease Advisory Council (RDAC), critical decisions are often made without the input of those most affected, increasing the risk of poor health and economic outcomes. AB 2613 addresses this issue by ensuring that the rare disease community has a seat at the table in shaping legislation and policies.

"AB 2613 represents a significant step forward in our efforts to support the millions of Californians living with rare diseases," said Assemblymember Rick Chavez Zbur. "This bill is deeply personal for me, inspired by my sister Jackie, whose struggle with ALS highlighted the shortcomings of our broken healthcare system. She made me promise to do whatever I could to fix it, and this bill is one of the ways I am fulfilling that promise. I believe it will make a real difference for countless families across our state, and amplify the voices of those affected while providing the Legislature with the guidance needed to create meaningful policies that address the unique challenges faced by the rare disease community."

"We are thankful to Assemblymember Zbur for championing this important legislation to create the Jacqueline Marie Zbur Rare Disease Advisory Council in California, and the rare disease patients and caregivers whose advocacy efforts helped this bill pass both houses of the Legislature unanimously," said Lindsey Viscarra, State Policy Manager for the National Organization for Rare Disorders. "There are more than 10,000 rare diseases and while each is unique, common challenges exist for patients, which can be improved by giving the rare disease community a prominent voice in state government decision making. We urge Governor Newsom to sign AB2613 into law as soon as possible."

The Governor has until September 30, 2024 to sign the bill.

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, [email protected]