August 27, 2024-
The Hemophilia Council of California this week joined with the four bleeding disorder foundations in California- HFSC, HFNC, CCBDF and HASDC- as well as our two national organizations – NBDF and HFA- to submit a letter to the Governor’s office requesting he sign Assembly Bill 2613- Jacqueline Marie Zbur Rare Disease Advisory Council- when it reaches his desk in September.
A Rare Disease Advisory Council (RDAC) in California AB 2613 would help raise awareness about rare disorders, provide valuable knowledge and information to policymakers, and be a resource to individuals and families throughout their journey with a rare disease, as well as to medical providers who are working to support a patient in their diagnosis.
To read the entire letter and see the complete list of signers, click here.
