As a member of the Assembly Budget Subcommittee No. 1 on Health, I know that the health and wellbeing of Californians is of utmost importance to you. I am reaching out today as someone with deep ties to the rare disease community to urge you to allocate the necessary funding for the Jaqueline M. Zbur Rare Disease Advisory Council (RDAC), ensuring it has the resources to support the legislature in addressing healthcare access, equity, and innovation.

In 2024, Governor Newsom signed AB 2613 into law, officially establishing the RDAC in California. This important move recognizes the need for a dedicated advisory body that brings together stakeholders from the rare disease community to tackle the challenges faced by the 1-in-10 Californians living with a rare disease. Rare diseases often suffer from limited research, treatment options, and policy support, leaving patients and families without the resources they need.

Without sufficient funding, the council's ability to conduct research, organize meetings, craft policy recommendations, develop patient resources, and advocate for vital initiatives will be severely constrained. 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 providing the necessary funding for the RDAC, California can join 28 other states that have already established similar councils, demonstrating their commitment to the rare disease community. These councils have proven to be invaluable, helping to reduce costs and encourage innovation that benefits both the rare disease community and the broader public.

I urge you to show your commitment to healthcare equity and support for the rare disease community by approving the budget request for AB 2613.