Louisiana Rare Disease Advisory Council

The Louisiana Rare Disease Advisory Council was established in 2021 through Revised Statute 40:1122.1 within the Louisiana Department of Health to serve only in a resource capacity to public and private agencies in the state that provide services to individuals diagnosed with rare diseases. The Advisory Council serves the rare disease population by shaping public policy, providing oversight, and ensuring the effective implementation of laws and regulations.

The Louisiana Rare Disease Advisory Council operates under the Louisiana Department of Health, Office of Public Health, Bureau of Family Health, and provides support and policy expertise to assist the Bureau of Family Health, Louisiana Genetic Diseases Program in providing advice on research, diagnosis, treatment, and education related to rare diseases. To learn more, visit the Genetic Diseases Program webpage.

Responsibilities of the Louisiana Rare Disease Advisory Council

  • Provide input and feedback to the Louisiana Department of Health, and any other state agency, on matters that affect a person who has been diagnosed with a rare disease, including but not limited to:

    • Pandemic preparedness and response, and its impact on a person living with a rare disease.

    • Research, education, diagnosis, and treatment relating to rare diseases within this state.

    • Rare diseases in general, the severity of rare diseases, and unmet medical needs associated with rare diseases.

    • The demographics and clinical description of patient populations.

    • Timely access to screening, care, insurance or Medicaid coverage, specialists, and other needed services for a patient who has been diagnosed with a rare disease.

    • The impact that coverage, cost-sharing, tiering, and any other utilization management procedure have on providing treatment and services to a patient who has been diagnosed with a rare disease.

  • Provide expert and clinical advice to the board in its review of treatments for a rare disease. The treatments may include drugs or biological products emerging from fields of personalized medicine and non-inheritable gene editing therapeutics.

  • Provide a report to the governor, the Legislature of Louisiana, the Louisiana Department of Health, and any other relevant agency that summarizes the findings, activities, and progress of the Advisory Council and recommendations for addressing the needs of Louisianans living with a rare disease.

Goals and Priorities of the Louisiana Rare Disease Advisory Council

  • Creating a plan to improve healthcare access for individuals living with a rare disease.

  • Studying and improving education programs that help improve the quality of care and services for individuals living with a rare disease.

Membership

The Louisiana Rare Disease Advisory Council is composed of 12 members appointed by the Governor, President of the Senate, and Speaker of the House of Representatives. Members serve at will and represent a range of expertise from state agencies, healthcare, research, and patient advocacy. To apply or nominate someone for a seat on this commission, please email [email protected].

Member Name Member Seat
Hans Andersson A physician who is licensed and practicing in this state with experience in researching, diagnosing, or treating rare diseases
Jennifer Borrillo A representative from an academic research institution in this state that conducts rare disease research
Ross Klingsberg A representative from an academic research institution in this state that conducts rare disease research
Stephen Le A resident of this state who is 18 years of age or older and has been diagnosed with a rare disease
Kelly Rouse Louisiana House of Representatives
Trina Stelly A caregiver for a person diagnosed with a rare disease
Vacant A representative of a rare disease patient organization operating in this state
Vacant A geneticist who is licensed and practicing in this state
Vacant A physician who is licensed and practicing in this state with experience in researching, diagnosing, or treating rare diseases
Vacant A registered nurse or advanced practice registered nurse who is licensed and practicing in this state and has experience treating rare diseases
Vacant A representative from the Louisiana Department of Health
Vacant Louisiana Senate

Meeting Information: Schedule, Agendas, and Minutes

The Louisiana Rare Disease Advisory Council is required to hold at least four regular meetings each year, as stated in Louisiana Revised Statute 40:1122.1.

To request an accommodation for a public meeting or event hosted by the Louisiana Rare Disease Advisory Council under the Bureau of Family Health, please contact [email protected] at least two weeks before the public meeting. Accommodations include, but are not limited to, requests for interpreters, accessible seating, large print, virtual attendance, and more.

Meeting Schedule:

  • May 19, 2026: Meeting Agenda | Meeting Minutes

  • August 25, 2026: Meeting Agenda | Meeting Minutes

  • November 17, 2026: Meeting Agenda | Meeting Minutes

2025 Meetings
2024 Meetings
2023 Meetings
2022 Meetings

For more information, contact the Bureau of Family Health Louisiana Rare Disease Advisory Council Facilitator:

[email protected] | 225-342-1678
Sickle Cell Disease Strategy Manager

Surgeon General Evelyn Griffin, MD

Secretary Bruce D. Greenstein

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