The bipartisan Rare Disease California Caucus is led by Assemblymember Rob Bonta (D-Oakland) and Assemblymember Brian Maienschein (R-San Diego) to promote awareness of rare disease issues.


  • Bring public and legislative awareness
  • Ensure patients have a voice in shaping policy
  • Educate legislators and staff about rare disease policy issues
  • Opportunity for legislature to engage with rare disease community (patients, academia, hospitals, biopharmaceutical industry, government agencies)

Why California?

  • Estimated 3.95 million people with a rare disease, half are children
  • Large patient community, over 300 organizations
  • More than 2,500 biomedical companies and institutions
  • Leads the world in life sciences research and development

A Few Facts:

  • California is the second state to have a legislative caucus, Pennsylvania is the first.
  • There is a Congressional Rare Disease Caucus as well.


  • CA Action Link for Rare Diseases (CAL RARE), President Angela Ramirez Holmes,
  • Everylife Foundation, Executive Director Julia Jenkins,

Staff Contact:

  • Assembly member Rob Bonta’s office: Alma Barreras,, 916-319-2018
  • Assembly member Brian Maienschein’s office: Olga Shilo,, 916-319-2077

Rare Disease California Caucus Briefings:

April 11th, 2018: Rare Disease 101 Informational Briefing

Members of the Caucus (As of 03/22):

1. Assemblymember Bonta (Co-Chair)
2. Assemblymember Maienschein (Co-Chair)
3. Assemblymember Choi
4. Assemblymember Arambula
5. Assemblymember Fong
6. Assemblymember Waldron
7. Assemblymember Salas
8. Assemblymember Gipson
9. Assemblymember Obernolte
10. Assemblymember Cunningham
11. Assemblymember Levine
12. Assemblymember Quirk
13. Assemblymember Cooper
14. Assemblymember Chiu
15. Assemblymember Gloria
16. Assemblymember O’Donnell
17. Assemblymember Baker
18. Assemblymember Burke
19. Assemblymember Mathis
20. Assemblymember Gallagher
21. Assemblymember Irwin
22. Assemblymember Patterson
23. Senator Wiener
24. Senator Skinner
25. Senator Nielsen
26. Senator Dr. Pan
27. Senator Glazer
28. Senator Allen