HJR115 Alabama 2017 Session

Summary

Primary Sponsor

April WeaverSenator

Republican

Session

Regular Session 2017

Title

Rare Disease Advisory Council, created

Summary

The Alabama Legislature creates the Rare Disease Advisory Council within UAB's School of Medicine to guide state policy on rare diseases and improve collaboration across the state.

What This Bill Does

It establishes a council that will advise the Governor and Legislature on research, diagnosis, treatment, and education related to rare diseases. It sets rules for who can be on the council and ensures diverse representation from medical and research fields, hospitals, academic institutions, and foundations. The council will collect data on rare diseases and their economic impact, coordinate collaborations, highlight partnerships, and report findings to the Legislature annually; members are not paid.

Who It Affects

• People living in Alabama with rare diseases, who gain a voice through the council and may benefit from informed policy and improved services.
• Healthcare and research professionals and organizations in Alabama (doctors, nurses, hospital leaders, researchers, academic institutions, nonprofit foundations, and state officials) who participate in the council and whose work could influence policy, funding, and collaboration.

Key Provisions

• Creates the Rare Disease Advisory Council within the University of Alabama at Birmingham School of Medicine to advise the Governor and Legislature on research, diagnosis, treatment, and education relating to rare diseases.
• Specifies council membership, including physicians, nurses, researchers, hospital administrators, representatives from academic institutions and non-profit foundations, plus the State Health Officer as an ex officio member, with appointments by the Governor or designated leaders.
• Requires diversity in appointments to reflect Alabama's racial, gender, geographic, urban/rural, and economic makeup.
• Outlines the council's duties: discuss strategies, collect data on rare diseases and their cost/economic impact, coordinate collaborations, highlight clinician–investigator partnerships, and report findings annually to inform policy.
• Sets terms of three years for members, with a maximum of two consecutive terms, and details on appointment and succession, including initial appointments within 60 days.
• Gives the Governor the authority to appoint the council chair based on the Dean of the School of Medicine's recommendation.
• Establishes a simple majority quorum and requires the council to meet at least quarterly; members receive no compensation.

AI-generated summary using openai/gpt-5-nano on Feb 24, 2026. May contain errors — refer to the official bill text for accuracy.

Subjects

Resolutions, Legislative