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A 1296

Establishes the rare disease advisory council

2025 Regular Session Introduced by George Alvarez and 22 co-sponsors

Establishes a state Rare Disease Advisory Council to advise on policy, funding, and coordination for patients, providers, and agencies shaping rare-disease efforts.

SUBSTITUTED BY S1287A
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Bill Summary · A 1296

Summary of Bill A 1296 – Establishes the Rare Disease Advisory Council

Purpose and intent

  • A 1296 is titled “Establishes the rare disease advisory council.” The bill’s core aim is to create an official state-level advisory body to address issues related to rare diseases.
  • The bill’s status indicates it has been substituted by S1287A, meaning the introduced A1296 has been replaced in the legislative process by a related bill (S1287A) that is progressing in the legislature.

Key provisions (as introduced)

  • The bill would establish a Rare Disease Advisory Council. While the exact duties, composition, and powers are defined in the bill’s text, the title indicates the council would advise on rare disease-related matters within the state.
  • Specific provisions such as membership composition, appointment processes, scope of authority, reporting requirements, funding, and interaction with state agencies would be detailed in the statute text (not included in the brief summary provided).

Note: The provided information does not include the full language of A 1296, so exact duties, powers, and organizational structure are not listed here. The substitution by S1287A means the current, active language is likely found in the substitute bill S1287A (and its related companion S1287), rather than in A1296 as introduced.

Affected entities

  • Individuals with rare diseases and the broader rare disease community could be affected through engagement with the advisory council, influence on state policy, and potential access to improved coordination of services.
  • State agencies involved in health, public health infrastructure, research funding, and patient services would interact with the council for guidance and implementation of recommendations.
  • Other stakeholders include healthcare providers, researchers, patient advocacy organizations, and policymakers.

Legislative history and status

  • Introduced: January 9, 2025.
  • Sponsor: Amy Paulin (primary) with a broad list of cosponsors.
  • Key actions:
    • January 9, 2025: Referred to HEALTH.
    • January 29, 2025: Amended and recommitted to HEALTH; printed as 1296A.
    • February 4, 2025: Reported to WAYS AND MEANS.
    • May 27–29, 2025: Repeated actions including “REPORTED,” “RULES REPORT CAL.291,” and “ORDERED TO THIRD READING.”
    • May 29, 2025: Substituted by S1287A (the active language moving forward in the process).
  • Related bills:
    • A 10292 (prior-session).
    • S 1287 (companion in the Senate; appears repeatedly in documentation as the Senate counterpart).
    • Multiple references to S1287 as the companion, suggesting alignment between chambers.

Procedural/timeline notes

  • Substitution by S1287A indicates the bill’s core framework is being carried forward in a different bill number, likely with consolidated or updated language.
  • The presence of a companion Senate bill (S1287) suggests cross-chamber collaboration; readers should consult S1287A (the substituted version) for current language and status.
  • If following the bill’s progress, monitor committee actions (e.g., HEALTH, WAYS AND MEANS, RULES) and any floor votes or further substitutions.

What to watch for next

  • Review the text of S1287A to understand exact council composition, duties, appointment processes, funding, reporting requirements, and any sunset provisions.
  • Check for any fiscal notes or funding provisions from WAYS AND MEANS.
  • Look for related implementation steps, such as rules, regulations, or agency memoranda that might accompany the council’s establishment.

If you’d like, I can compare A1296’s language with S1287A once the substituted text is available, and extract the precise provisions and timelines.

Compiled from official sources — confirm details with the bill’s official record.

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