Advocating for Californians with Rare Diseases

Rare diseases, defined as conditions affecting fewer than 200,000 people in the United States, collectively impact over 1 in 10 Californians. Despite their low individual prevalence, there are more than 7,000 rare diseases, many of which are life-threatening, debilitating, or have limited treatment options.

Our mission is to raise awareness, drive legislative action, and foster collaboration between policymakers, patients, healthcare providers, and advocates. We are committed to:

Promoting Research and Innovation: Supporting efforts to develop new treatments and cures for rare diseases.
Enhancing Access to Care: Advocating for equitable healthcare policies that reduce the barriers rare disease patients face, such as delays in diagnosis or high treatment costs.
Building Awareness: Educating lawmakers, the public, and healthcare providers about the unique challenges of rare diseases to foster a more supportive and inclusive system.

Every rare disease patient deserves hope, care, and a voice. The Rare Disease Caucus is proud to stand with the rare disease community in the fight for better policies, greater resources, and a brighter future.