As a member of the Assembly Budget Subcommittee No. 1 on Health, I know that the health and wellbeing of Californians is of grave importance to you. I am writing today to advocate for funding to support the Jaqueline M. Zbur Rare Disease Advisory Council (RDAC), so it can effectively assist the legislature on key issues related to healthcare access, equity, and innovation.

In 2024, Governor Newsom signed AB 2613 into law, establishing a RDAC in California. This important step acknowledges the need for an advisory body comprised of stakeholders across the rare disease community to address the unique challenges faced by approximately 1-in-10 Californians living with a rare disease. Rare diseases often lack adequate research, treatment options, and policy support, leaving patients and families struggling to access appropriate care.

Without adequate funding, the council's ability to conduct research, host meetings, develop policy recommendations, develop patient resources, and advocate for critical initiatives is hindered. The budget request for the program is $ 2.6 million over the 3-year program period. This budget aligns with the recommendation from Assembly Appropriation’s fiscal analysis of AB 2613.

By supporting this funding request for the RDAC, California would join 29 other states that have already enacted similar legislation in support of their rare disease communities and proved that an RDAC can be an invaluable resource, driving down costs and fostering innovation for rare disease patients and the general public alike.

I urge you to demonstrate a commitment to equity in healthcare, support the rare disease community, and foster stakeholder-led change by approving the budget request for AB 2613.