HB 3554

relating to establishment of the Texas Rare Disease Advisory
BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS:
SECTION 1.  Subtitle E, Title 2, Health and Safety Code, is
amended by adding Chapter 101A to read as follows:
CHAPTER 101A.  TEXAS RARE DISEASE ADVISORY COUNCIL
Sec. 101A.001.  DEFINITIONS.  In this chapter:
(1)  "Advisory council" means the Texas Rare Disease
Advisory Council established under this chapter.
(2)  "Rare disease" means a disease, disorder, or
condition that affects fewer than 200,000 individuals in the United
Sec. 101A.002.  ESTABLISHMENT.  (a)  The Texas Rare Disease
Advisory Council is established to advise the governor, state
agencies, and private entities that provide health care services or
other treatment to individuals diagnosed with rare diseases in this
state on strategies for improving health outcomes for those
(b)  The department shall provide to the advisory council
resources, personnel, and other administrative support as
necessary for the council to carry out its duties under this
Sec. 101A.003.  ADVISORY COUNCIL MEMBERS.  (a)  The advisory
council is composed of 23 members appointed as follows:
(1)  11 members appointed by the governor as follows:
(A)  one representative of the department;
(B)  one representative of the commission;
(C)  one representative of the Texas Department of
(D)  one representative of the Texas Education
(E)  one geneticist practicing in this state;
(F)  one registered nurse or advanced practice
registered nurse licensed and practicing in this state with
experience in treating rare diseases;
(G)  one hospital administrator of a hospital in
this state that provides care to individuals diagnosed with a rare
(H)  one pharmacist licensed and practicing in
this state with experience dispensing prescription drugs used in
(I)  one representative of the biotechnology
(J)  one representative of a health insurance
(K)  one physician licensed and practicing in this
state with experience in treating rare diseases;
(2)  six members appointed by the lieutenant governor
(A)  one representative of an academic research
institution in this state that receives grant funding for rare
(B)  one physician licensed and practicing in this
state with experience in treating rare diseases;
(C)  one individual who is 18 years of age or older
and who is diagnosed with a rare disease;
(D)  two individuals who are, or previously served
as, caregivers for an individual diagnosed with a rare disease; and
(E)  one representative of an organization that
provides care or other support to individuals diagnosed with a rare
(3)  six members appointed by the speaker of the house
(A)  one representative of an academic research
institution in this state that receives grant funding for rare
(B)  one physician licensed and practicing in this
state with experience in treating rare diseases;
(C)  one individual who is 18 years of age or older
and who is diagnosed with a rare disease;
(D)  two individuals who are, or previously served
as, caregivers for an individual diagnosed with a rare disease; and
(E)  one representative of an organization that
provides care or other support to individuals diagnosed with a rare
(b)  Advisory council members serve staggered four-year
terms, with the terms of one-half of the members, or as near to
one-half as possible, expiring February 1 of each odd-numbered
(c)  A vacancy on the advisory council shall be filled for
the unexpired term in the same manner as the original appointment.
Sec. 101A.004.  PRESIDING OFFICER; ASSISTANT PRESIDING
OFFICER.  The governor shall annually select from among the
advisory council members a presiding officer and an assistant
Sec. 101A.005.  COUNCIL MEETINGS.  (a)  The advisory council
(1)  at the call of the advisory council's presiding
(2)  on request by a majority of the advisory council
(b)  A majority of the voting members of the advisory council
(c)  A meeting conducted under this section may be in person
or by video conference call, as determined by the advisory
(d)  The advisory council shall provide notice of upcoming
advisory council meetings on the department's Internet website.
Sec. 101A.006.  DUTIES.  (a)  The advisory council shall:
(1)  consult with experts on rare diseases and solicit
public comment to develop policy recommendations for improving the
treatment of rare diseases in this state;
(2)  develop strategy recommendations for academic
research institutions of higher education in this state to
facilitate continued research on rare diseases;
(3)  develop strategy recommendations for health care
providers to better recognize and diagnose rare diseases to improve
(4)  make recommendations to the department and other
state agencies on matters affecting individuals diagnosed with a
rare disease, including emergency preparedness and response
resources for a pandemic or natural disaster.
(b)  The advisory council shall provide the department with
the strategy recommendations developed under Subsection (a)(3) for
publication on the department's Internet website.
Sec. 101A.007.  ANNUAL REPORT.  (a)  Not later than September
1 of each year, the advisory council shall prepare and submit to the
governor and commissioner a report that includes:
(1)  a summary of the advisory council's activities for
(2)  recommendations for legislative or other action on
rare disease research and care.
(b)  The advisory council shall publish the report prepared
and submitted under Subsection (a) on the department's Internet
Sec. 101A.008.  APPLICABILITY OF OTHER LAW.  Section
2110.008, Government Code, does not apply to the advisory council.
SECTION 2.  Not later than December 1, 2025, the appropriate
appointing authority shall appoint the initial members to the Texas
Rare Disease Advisory Council as required by Section 101A.003(a),
Health and Safety Code, as added by this Act, with the initial
members' terms expiring as follows:
(1)  the terms of five members appointed under Section
101A.003(a)(1), of three members appointed under Section
101A.003(a)(2), and of three members appointed under Section
101A.003(a)(3) expiring February 1, 2029; and
(2)  the terms of six members appointed under Section
101A.003(a)(1), of three members appointed under Section
101A.003(a)(2), and of three members appointed under Section
101A.003(a)(3) expiring February 1, 2031.
SECTION 3.  Notwithstanding Section 101A.005, Health and
Safety Code, as added by this Act, the Texas Rare Disease Advisory
Council shall conduct the council's first meeting not later than
SECTION 4.  Notwithstanding Section 101A.007, Health and
Safety Code, as added by this Act, the Texas Rare Disease Advisory
Council shall submit the first report required by that section not
SECTION 5.  This Act takes effect September 1, 2025.