RDACs by State
Click below on your state to see the current Rare Disease Advisory Council status
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Click below on your state to see the current Rare Disease Advisory Council status
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Alaska has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email RDAC@rarediseases.org.
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.
Legislation is being actively pursued in Arkansas to create a Rare Disease Advisory Council. To get more involved, email
RDAC@rarediseases.org.
Legislation is being actively pursued in Arizona to pass a Rare Disease Advisory Council. To get more involved, email RDAC@rarediseases.org.
Legislation is being actively pursued in California to create a Rare Disease Advisory Council. To get more involved, email RDAC@rarediseases.org.
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
RDAC@rarediseases.org.
Iowa has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email RDAC@rarediseases.org.
Idaho has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email
RDAC@rarediseases.org.
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 RDAC@rarediseases.org.
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.
Legislation is being actively pursued in Mississippi to pass a Rare Disease Advisory Council. To get more involved, email
RDAC@rarediseases.org.
Montana has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email
RDAC@rarediseases.org.
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
RDAC@rarediseases.org.
Nebraska has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email RDAC@rarediseases.org.
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 RDAC@rarediseases.org.
New Mexico has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email RDAC@rarediseases.org.
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.
Oklahoma has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email RDAC@rarediseases.org.
Oregon has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email RDAC@rarediseases.org.
Rhode Island has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email RDAC@rarediseases.org.
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 RDAC@rarediseases.org.
South Dakota has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email RDAC@rarediseases.org.
Tennessee created a Rare Disease Advisory Council in 2020 that is administratively attached to TennCare (the state’s Medicaid agency). Visit their website here.
Legislation is being actively pursued in Texas to pass a Rare Disease Advisory Council. To get more involved, email RDAC@rarediseases.org.
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 RDAC@rarediseases.org.
Vermont has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email RDAC@rarediseases.org.
Legislation is being actively pursued in Washington to pass a Rare Disease Advisory Council. To get more involved, email RDAC@rarediseases.org.
Senate Bill 689 is being actively pursued in Wisconsin to create a Rare Disease Advisory Council. To get more involved, email RDAC@rarediseases.org.
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 RDAC@rarediseases.org.