HB 3554 Texas House · 89th Legislature (2025)

Relating to establishment of the Texas Rare Disease Advisory Council.

HB 3554 establishes the Texas Rare Disease Advisory Council under the Health and Safety Code to advise the governor, state agencies, and healthcare providers on improving care for Texans with rare diseases. The council, composed of 23 appointed members including patients, caregivers, doctors, nurses, pharmacists, and industry representatives, will develop recommendations for better health outcomes. It requires the state health department to provide administrative support to the council. This bill directly affects individuals diagnosed with rare diseases (defined as conditions impacting fewer than 200,000 people nationally) by creating a formal channel for their input into healthcare policy.

Issues: ✓ Healthcare

Bill status passed 3 of 5 stages cleared

Introduction

Mar 2025

Committee Review

May 2025

House Passage

May 2025

Senate Passage

Governor

Introduced Mar 25, 2025 Last action May 15, 2025

Maddy AI version diff · 1 comparison

What changed between versions

Introduced → Engrossed · 7 edits · May 15, 2025

MODERATE

The bill was updated from an introduced version to an engrossed version, incorporating substantive additions including new sections on annual reporting, publication of strategy recommendations, initial member appointment deadlines, and specific effective dates. These changes establish operational requirements for the newly created Texas Rare Disease Advisory Council and set clear timelines for its implementation.

Scope change

The bill's scope expanded to include detailed operational procedures, reporting requirements, and specific implementation deadlines that were not present in the original introduced version.

REQUIREMENT

Added requirement for the advisory council to publish strategy recommendations on the department's website.

Added Section 5 establishing the act's effective date as September 1, 2025.

Added Section 101A.007 requiring an annual report to the governor and commissioner summarizing council activities and providing recommendations.

TIMELINE

Added Section 2 establishing December 1, 2025 deadline for appointing initial council members with staggered expiration dates of February 1, 2029 and February 1, 2031.

Added Section 3 requiring the first council meeting to occur no later than January 1, 2026.

Added Section 4 requiring the first annual report to be submitted no later than September 1, 2026.

TECHNICAL

Formatting and spacing changes throughout the document to align with standard legislative formatting conventions.

Floor votes · House May 15, 2025

How they voted

89–52

Passed · 4 other

Total votes 145

May 15, 2025

D Democratic60

57 Yea 1 Nay 2

95% Yea

R Republican85

32 Yea 51 Nay 2

60% Nay

Vote distribution

All Yea All Nay Mixed No data

Full legislative history

Actions timeline

Total actions

Key actions

Committee

May 15, 2025

Introduced

Received from the House

upper

May 15, 2025

Lower · Passed

Passed

lower

May 14, 2025

Lower · Passed

Passed to engrossment

lower

May 8, 2025

Lower · Passed

Committee report sent to Calendars

lower

May 7, 2025

Lower · Passed

Committee report distributed

lower

May 1, 2025

Lower · Passed

Reported favorably w/o amendment(s)

lower

Apr 29, 2025

Lower · Passed

Left pending in committee

lower

Apr 29, 2025

Lower · Passed

Testimony taken/registration(s) recorded in committee

lower

Mar 25, 2025

Committee

Referred to Public Health

lower

Mar 25, 2025

Introduced

Read first time

lower

5 primary · 3 co-sponsors