RDACs by State
Click below on your state to see the current Rare Disease Advisory Council status
Click below on your state to see the current Rare Disease Advisory Council status
Alaska has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email [email protected].
Alabama created a Rare Disease Advisory Council in 2018 that is housed within the School of Medicine at University of Alabama Birmingham. Visit their website here.
Arkansas has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort?
Email [email protected] .
Legislation is being actively pursued in Arizona to pass a Rare Disease Advisory Council. To get more involved, email [email protected].
Legislation is being actively pursued in California to create a Rare Disease Advisory Council. To get more involved, email [email protected].
Colorado created a Rare Disease Advisory Council in 2022 that is housed within the Department of Health.
Connecticut created a Rare Disease Advisory Council in 2022 that is housed within the Department of Health.
Delaware enacted a Rare Disease Advisory Council in 2023 that is housed with the Office of the Lieutenant Governor.
Florida created a Rare Disease Advisory Council in 2021 that is housed within their Department of Health. Visit their website here.
Georgia created a Rare Disease Advisory Council in 2022 that is housed within the Department of Health.
Hawaii has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email
[email protected].
Iowa has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email [email protected].
Idaho has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email
[email protected].
Illinois created a Rare Disease Commission in 2017 that is housed within the Department of Health until 2026.
Indiana created a Rare Disease Advisory Council in 2023 that is housed within the Department of Health.
Kansas has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort?
Email [email protected].
Maine created a Rare Disease Advisory Council in 2022 that is within the their Department of Health.
Kentucky created a Rare Disease Advisory Council in 2019 that is required to be housed within a nonprofit operating in Kentucky.
Louisiana created a Rare Disease Advisory Council in 2021 that is housed within their Department of Health.
Massachusetts created a Rare Disease Advisory Council in 2020 housed within their Department of Health. Visit their website here.
Maryland created a Rare Disease Advisory Council in 2023 that is housed within the Department of Health.
House
Bill 4654 is actively being pursued in Michigan to create a Rare Disease Advisory Council and state funding for
the
Council has been secured. To get more involved, email Visit their website here.
Minnesota created the Chloe Barnes Advisory Council on Rare Diseases in 2019 that is housed within the University of Minnesota. Visit their website here.
Missouri created a Rare Disease Advisory Council in 2018 to advise the state’s Medicaid Drug Utilization Review board. Visit their website here.
Mississippi enacted a RDAC in 2024 that is housed within the University of Mississippi Medical Center.
Montana has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email
[email protected].
North Carolina created a Rare Diseases Advisory Council in 2015 housed within the School of Medicine at UNC Chapel Hill. Visit their website here.
North Dakota has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email
[email protected].
Nebraska has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email [email protected].
New Hampshire created a Rare Disease Advisory Council in 2019 housed within their Department of Health. Visit their
website here.
Senate Bill 2682 was signed into law by
Governor Murphy on June 30th to create a Rare Disease Advisory Council. Learn more about the effort in this one-pager or to get more involved,
email [email protected].
New Mexico has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email [email protected].
Nevada created a Rare Disease Advisory Council in 2019 housed within their Department of Health. Visit their website here.
New York created a rare disease work group in 2020 that will work in collaboration with the Department of Health and Financial Services.
Ohio created a Rare Disease Advisory Council in 2020 housed within their Department of Health.
Pennsylvania created a Rare Disease Advisory Council in 2017. Originally, the Department of Health provided administrative support to the council, but now the council operates independently. Visit their website here.
Legislation is being actively pursued in Oklahoma to create a Rare Disease Advisory Council. To get more involved, email [email protected] .
Oregon has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort?
Email [email protected] .
Legislation is being actively pursued in Rhode Island to pass a Rare Disease Advisory Council. To get more involved, email [email protected].
On June 26th, Governor Henry McMaster signed into law provisions creating the South Carolina Rare Disease Advisory Council (RDAC), which will be housed within the Medical University of South Carolina (MUSC). If you would like to get more information, please email us at [email protected].
South Dakota has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email [email protected].
Tennessee created a Rare Disease Advisory Council in 2020 that is administratively attached to TennCare (the state’s Medicaid agency). Visit their website here.
Texas has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort?
Email [email protected] .
Utah created a Rare Disease Advisory Council in 2020 that is administered by BioUtah Visit their website here.
House Bill 1995 was signed by Governor Northam on March 24th to create a Rare Disease Advisory Council. Learn more about the effort in this one-pager or to get more involved, email [email protected].
Legislation is being actively pursued in Vermont to create a Rare Disease Advisory Council. To get more involved, email [email protected].
Legislation is being actively pursued in Washington to pass a Rare Disease Advisory Council. To get more involved, email [email protected].
Wisconsin has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email
[email protected].
West Virginia created a Rare Disease Advisory Council in 2020 housed within the Department of Health.
Wyoming has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email [email protected].