This fall, the Hemophilia Council of California brought together advocates from across the state for Fall Advocacy Days—a powerful opportunity to share our stories, educate decision-makers, and build bridges for a better tomorrow. The event began with virtual training sessions via Zoom, equipping participants with essential skills in advocacy, including how to approach local representatives, what topics to address, and the importance of telling our community’s story. Armed with this knowledge, advocates then visited state representatives at their district offices.

These face-to-face meetings provided an opportunity to discuss the unique challenges faced by individuals living with hemophilia and other bleeding disorders. Many representatives admitted they were unfamiliar with bleeding disorders, giving us the chance to explain their complexities and the critical need for access to lifesaving medications. We emphasized that while advancements in treatment bring hope, barriers such as availability and affordability remain significant hurdles.

What stood out most during these visits was the genuine concern expressed by elected officials, regardless of political affiliation. The issue of access to quality healthcare transcended party lines, becoming a truly bipartisan conversation. Representatives recognized the importance of ensuring all constituents receive the care they need and expressed a commitment to supporting our community.

Advocacy Days reaffirmed that effective advocacy is about telling our stories and standing up for what matters. By being seen and heard, we take meaningful steps toward securing a brighter future for everyone affected by bleeding disorders.

Rigoberto Garcia, MPH
Executive Director