The bipartisan Rare Disease California Caucus is led by Assemblymember Rob Bonta (D-Oakland) and Assemblymember Brian Maienschein (R-San Diego) to promote awareness of rare disease issues.

Goals:

• Bring public and legislative awareness
• Ensure patients have a voice in shaping policy
• Educate legislators and staff about rare disease policy issues
• Opportunity for legislature to engage with rare disease community (patients, academia, hospitals, biopharmaceutical industry, government agencies)

Why California?

• Estimated 3.95 million people with a rare disease, half are children
• Large patient community, over 300 organizations
• More than 2,500 biomedical companies and institutions
• Leads the world in life sciences research and development

A Few Facts:

• California is the second state to have a legislative caucus, Pennsylvania is the first.
• There is a Congressional Rare Disease Caucus as well.

Support:

• CA Action Link for Rare Diseases (CAL RARE), President Angela Ramirez Holmes, angela@calrare.org
• Everylife Foundation, Executive Director Julia Jenkins, jjenkins@everylifefoundation.org

Staff Contact:

• Assembly member Rob Bonta’s office: Alma Barreras, alma.barreras@asm.ca.gov, 916-319-2018
• Assembly member Brian Maienschein’s office: Olga Shilo, olga.shilo@asm.ca.gov, 916-319-2077