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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.   


Thursday, April 27, 2023 2:34 PM

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.



Saturday, August 6, 2022 12:33 PM

Rare 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.


Tuesday, November 2, 2021 10:52 AM

WEBINAR: Understanding Health Insurance for Rare Disease Patients



Sunday, November 8, 2020 8:25 PM

Virtual Event: How To Survive School With A Rare Disease


Friday, October 2, 2020 9:51 AM

Virtual Event: Mindfulness

Join us for this virtual event on mindfulness. What is it? How can it be helpful? Clinical Psychologist Beth DiNapoli will give us the information and science and guide us through a mindfulness exercise. Free event. All ages welcome.


California Action Link for Rare Diseases Inc. (CAL RARE), 1811 Santa Rita Road, Suite 224, Pleasanton, CA 94566

CAL RARE is a registered 501(c)(3) non-profit organization #81-5461840
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