Organization Mission:

CAL RARE is dedicated to improving the lives of rare disease patients in California. We are a coalition of rare disease stakeholders with a goal to raise awareness among the general public and decision makers regarding rare diseases. We want to bring recognition to the issues rare disease patients face and work to ensure access to physicians, treatments, and social services.

• Website: CalRare.org
• Contact: Angela Ramirez Holmes, President angela@calrare.org

Caucus or Advisory Council

California has an active State Legislative Caucus led by Assembly Members Rob Bonta, Brian Maienschein and Marie Waldron.

A bill to establish an Advisory Council failed in the legislature in Spring of 2019.

Upcoming Rare Disease Events in California

• September 19-20, 2019 RARE Patient Advocacy Summit, Sheraton, San Diego
• November 9-10, 2019, Disorder: Rare Disease Film Festival, San Francisco

Advocacy Resources

• Find your State Representatives
• NORD’s State Report Card

State Legislation Action Alerts:

• Ask your State Legislator to join the Rare Disease Caucus