Bleeding Disorders Council of California

06/23/2026

Patients must be the focus of our innovation and our health care system.

Finding fellow advocates and allies here at as we move the mission forward.

06/23/2026

In the coming months, many Medi-Cal beneficiaries will see changes in their eligibility process for coverage.

Why is this happening? A federal law enacted in 2025 -as part of President Trump’s signature tax package- mandates a lot of these changes.

Check out our blog below for some of the key issues that you should be aware of if you have Medi-Cal!

In the coming months, many Medi-Cal beneficiaries will see changes in their eligibility process for coverage. This is based on new federal law enacted in 2025 in President Trump’s signature tax…

06/23/2026

In San Diego building support for the rare disease community in California! Meeting with potential partners because we can accomplish more working together!

06/23/2026

ICYMI MONDAY! Sophia Horta is BDCC's first "Future Leader Board Representative"! Sophia joined the Board as a youth representative elected by her fellow Future Leaders back in March 2026. She has since attended two board meetings and provided key youth perspective to the decision-making process of the Board. Welcome, Sophia!

To see Sophia's photo and bio on our Board page, visit https://www.bdcouncilca.org/meet-the-board/

06/16/2026

Big shout out to CA advocates - Paul, Mason and Sophia who joined HFA’s regional advocacy training this past weekend! Proud to say they are all Future Leader Alumni!

📍 Denver Advocacy Regional Training

Advocacy starts with people who are willing to show up.

This weekend, advocates from across the bleeding disorders community gathered in Denver to strengthen their advocacy skills, share their personal stories, and learn how to effectively engage lawmakers on issues that impact patients and families.

Together, they built new connections, gained practical advocacy tools, and strengthened their ability to advocate for access to care and a stronger future for the bleeding disorders community.

A special thank you to Genentech, Takeda, and Pfizer for helping make this training possible. Their support empowers advocates with the knowledge, confidence, and resources needed to create meaningful change.

The conversations started in Denver don't end there. They continue in congressional offices, community meetings, and everyday moments when advocates speak up for themselves and others.

Ready to make your voice heard?

🔗 Join HFA's Bleeding Disorders Advocacy Network:
https://hemophiliafed.advocacyai.com/action/joinBDAN

💙 Advocacy. Action. Change.

06/12/2026

Thank you for joining us and our other California Rare Disease Access Coalition partners!

I am deeply grateful for the opportunity to advocate for our bleeding disorders community and the broader rare disease community.

Advocacy days like yesterday are a powerful reminder of why our voices matter. Every meeting, every story shared, and every conversation with legislators helps move us closer to better access, stronger protections, and more equitable care for the patients and families we serve.

Thank you to the Bleeding Disorders Council of California for organizing this important advocacy day, and to everyone who continues to show up, speak out, and fight for meaningful change. Ashley Gregory

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.