Please join California Rare Action Network for Rare Disease Day Advocacy Event on February 28, 2019 from 9:30am-1:00pm at the California State Capitol, Capitol Steps, 1315 10th St, Sacramento, CA 95814. Patients, families, caregivers, medical professionals and industry representatives are invited to attend this important event to discuss the challenges rare disease patients face and learn how you can make a difference in the lives of rare disease patients and their families here in our great state of California. REGISTER HERE
What's Happening Now?
PATIENT ADVOCACY & ORPHAN DRUG WORKSHOP March 9, 2019 from 8:30am to 3:00pm, Hyatt Regency Sacramento, Sacramento, California. The National Organization for Rare Disorders invites all advocates to attend and participate in the patient advocacy and orphan drug workshop. This will be an opportunity to learn about rare disease patient advocacy and connect with NORD about current legislative actions. In addition, this workshop will feature an opportunity to speak directly with members of Congress from California about the Orphan Drug Act. This event is hosted at no cost to participants. Light breakfast and lunch will be provided. CLICK HERE TO REGISTER TODAY!
Would you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for California’s Rare Action Network to attend your event? Contact your State Ambassadors today and learn more. Please check back regularly for news of upcoming events and activities in California.
Stanford & UCLA
Undiagnosed Disease Network
The Undiagnosed Diseases Network (UDN) is a research study funded by the National Institutes of Health Common Fund, made up of medical and research centers across the United States working to improve diagnosis and care of patients with undiagnosed diseases. Through this study, we hope to both help individual patients and families and contribute to the understanding of how the human body works.
Due to the complex nature of the body and the diseases being investigated, we cannot accept all applicants into the study. However, we do fully review all applications we receive. For more information about the UDN and the application process, please visit:
In order to make meaningful change in the lives of rare disease patients and their families in the state of California, we need you! Become active with the Rare Action Network by joining and utilizing the resources available on this website to take action and create change.
State Report Card
In this third edition of NORD’s State Policy Report Card we are seeking to expand our analysis to more issues that affect the rare disease community while also providing a more targeted analysis of policies analyzed in previous editions of the report.
Scoring for State Policies
A: State policy meets all desired standards. An A grade is considered the model policy that other states should seek to enact.
B: State policy meets most, but not all desired standards
C: State policy on the given issue meets minimum standards
D: State has some policy in place, but it does not meet the standards of higher tiers
F: State has no policy provision for the relevant issue
Dave Jones, Commissioner
California Department of Insurance
300 Capitol Mall, Suite 1700
Sacramento, California 95814
Online Complaint Submission
1-800-927-HELP (4357) or 1-213-897-8921
State Health Insurance Consumer Assistance Program
California Department of Insurance
Office of the Ombudsman
300 Capital Mall Suite 1600
Sacramento California, 95814