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Epilepsy Foundation of San Diego

Advocate for a Rare Disease Advisory Council in California

The Epilepsy Foundation of San Diego County joins the National Organization for Rare Disorders in advocating for California Bill AB 2613, to create a Rare Disease Advisory Council for the state.

White text in a transparent magenta circle, layered on a pink-toned overhead photo of the California legislature. Text says, "Action appeal. Submit a letter in support of AB 2613 for a rare disease advisory council in California." The white logo for the Epilepsy Foundation of San Diego County appears in the bottom right corner.

On April 23, a bill to create a Rare Disease Advisory Council in California known as AB 2613 will be heard in the Assembly Health Committee. Please join the Epilepsy Foundation of San Diego County (EFSDC) and National Organization for Rare Disorders (NORD) in making sure the Committee hears from California advocates!

WAYS TO HELP

Submit a position letter by Sunday, April 21, 2024. Follow these steps:

  1. Write a letter, as short or as long as you’d like, addressed to the Assembly Committee on Health. For help, personalize and send this sample letter provided by the National Organization for Rare Disorders (NORD).
  2. Follow these instructions to submit your position letter through the California Legislature Position Letter Portal.

Reshare and engage with our social media post about AB 2613. These actions truly matter! When you reshare our Instagram, Facebook, LinkedIn and Twitter/X post helps put the appeal in front of people we wouldn’t otherwise reach without your support.

Patients with rare disorders face unique challenges every day, and lawmakers often struggle to understand the needs of the rare disease community. A Rare Disease Advisory Council will provide opportunities for patients and advocates throughout California to educate lawmakers and make formal policy recommendations to state leaders about pressing issues.

If we take this action together, we have an excellent chance of seeing our state create a Rare Disease Advisory Council. Please submit a position letter today!