California Rare Disease Access Coalition

06/11/2026

Assemblymember Rick Chavez Zbur and his staff are champions for patients. As Chair of the Legislative Rare Disease Caucus and author of he is leading the charge on ensuring patients can access the treatment they need in a timely and efficient manner.

CRDAC thanks Sheila and the Assemblymember for their work on this issue!

06/11/2026

More opportunities as advocates from bleeding disorders and arthritis & inflammatory autoimmune disorders join forces to advocate for patients supporting and . Thank you to Camryn (Assemblymember Damon Connolly) for your careful consideration of these issues!

06/11/2026

More highlights from our first CRDAC advocacy day. Representatives from Cystic Fibrosis Research Institute and Northern California Bleeding Disorders Foundation met with Gavin from Senator Shannon Grove’s office to request support for - a priority of the Legislative Rare Disease Caucus.

06/11/2026

First annual CRDAC Virtual Advocacy Day today! Thank you to Tanya in Senator Catherine Blakespear's office for taking time to meet with advocates from PKU and bleeding disorders today!

Thank you to Senator Blakespear for supporting and being part of the Legislative Rare Disease Caucus. We look forward to your support of caucus priority legislation also.

06/11/2026

Health care should be more affordable, not complicated. ensures all eligible cost-sharing payments, including manufacturer assistance, count toward patients’ out-of-pocket maximums, helping Californians access treatment without financial burden.

06/11/2026

Health officials urge African governments to integrate care for rare blood disorders like hemophilia and thalassaemia into routine health services. Strengthening awareness and early diagnosis can improve care and prevent avoidable illness.
Read more here:

Kampala, Uganda | URN | Scientists and health officials have urged African governments to integrate treatment for rare blood disorders such as haemophilia and thalassaemia into routine healthcare services, warning that poor awareness and delayed diagnosis are causing unnecessary suffering and deaths...

06/11/2026

Amazing work - right here in California that saves lives!!

Hemophilia has been a constant thread in my family’s story. Some of my earliest childhood memories are of my father’s weekly plasma treatments . It was a regular part of our family’s daily life, but looking back, I realized those treatments weren’t just routine, they were his lifeline.

06/10/2026

Join healthcare experts and advocates for an engaging discussion on MASLD and MASH, featuring perspectives from leaders in public health, obesity care, community-based wellness innovation, and lived patient experience.
Register here: https://tinyurl.com/rax7j3m2

Have you registered for our upcoming Liver Q&A Webinar: Understanding & Managing MASLD and MASH (also known as fatty liver disease)?

Following the presentation by Dr. Monica Tincopa of UC San Diego Health, we’ll host a special Global Fatty Liver Day panel featuring experts in MASLD/MASH, public health leadership, obesity care, community‑based wellness innovation, and lived patient experience.

Join us to learn, connect, and take action.
Register at: https://livercoalition.zoom.us/webinar/register/WN_gN8TSep3TEacLqhmPh0kZw #/registration

06/09/2026

For the 4 million Californians living with rare diseases, delays in care can have serious consequences. removes barriers so patients can access medically necessary, FDA-approved treatments faster.

06/02/2026

A study in China highlighted critical knowledge gaps in the anesthetic care of children with rare diseases, emphasizing the need for greater awareness and specialized training.
Read more here:

A survey of anesthesia providers in China revealed a lack of awareness of specific anesthetic considerations for rare diseases such as DMD.