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.
News
3/27 Webinar: What To Know About Taking Time Off Work
1/30 Webinar: Medicare: What's New in 2025
7/16 Webinar: Understanding Your Rights at Work
Rare Disease California Caucus Briefing 5/3/2023
Please join us for a Rare Disease California Caucus briefing on Access to Care: Telehealth After Covid. State Capitol Room 127. This briefing is open to the public and accessible. A complimentary lunch will follow in Room 125.
AGENDARare Disease California Caucus Hearing 8/9/2022
Please join us for a Rare Disease California Caucus hearing on Access and Affordability. The agenda will provide information on the Genetically Handicapped Persons Program and the new CA Office on Healthcare Affordability and an update on the Rare Disease Caucus at Work including newborn screening and SB 912. This hearing will be in a hybrid format, open to the public, and accessible. Hearing location: Room 127. A complimentary lunch will follow in Room 125 for in person attendees.
