Recognizing Abbey Meyers, NORD Founder and Mother of a Movement

RDACs by State

Click below on your state to see the current Rare Disease Advisory Council status

Alaska

Alaska has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email [email protected].

Alabama

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

Legislation is being actively pursued in Arkansas to create a Rare Disease Advisory Council. To get more involved, email
[email protected].

Arizona

Legislation is being actively pursued in Arizona to pass a Rare Disease Advisory Council. To get more involved, email [email protected].

California

Legislation is being actively pursued in California to create a Rare Disease Advisory Council. To get more involved, email [email protected].

Colorado

Colorado created a Rare Disease Advisory Council in 2022 that is housed within the Department of Health.

Connecticut

Connecticut created a Rare Disease Advisory Council in 2022 that is housed within the Department of Health.

Delaware

Delaware has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email [email protected].

Florida

Florida created a Rare Disease Advisory Council in 2021 that is housed within their Department of Health. Visit their website here.

Georgia

Georgia created a Rare Disease Advisory Council in 2022 that is housed within the Department of Health.

Hawaii

Hawaii has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email
[email protected].

Iowa

Iowa has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email [email protected]rediseases.org.

Idaho

Idaho has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email
[email protected].

Illinois

Illinois created a Rare Disease Commission in 2017 that is housed within the Department of Health until 2026.

Indiana

Indiana created a Rare Disease Advisory Council in 2023 that is housed within the Department of Health.

Kansas

Kansas has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort?
Email [email protected].

Maine

Maine created a Rare Disease Advisory Council in 2022 that is within the their Department of Health.

Kentucky

Kentucky created a Rare Disease Advisory Council in 2019 that is required to be housed within a nonprofit operating in Kentucky.

Louisiana

Louisiana created a Rare Disease Advisory Council in 2021 that is housed within their Department of Health.

Massachusetts

Massachusetts created a Rare Disease Advisory Council in 2020 housed within their Department of Health. Visit their website here.

Maryland

Maryland created a Rare Disease Advisory Council in 2023 that is housed within the Department of Health.

Michigan

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

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

Missouri created a Rare Disease Advisory Council in 2018 to advise the state’s Medicaid Drug Utilization Review board. Visit their website here.

Mississippi

Legislation is being actively pursued in Mississippi to pass a Rare Disease Advisory Council. To get more involved, email
[email protected].

Montana

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

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

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

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

New Hampshire created a Rare Disease Advisory Council in 2019 housed within their Department of Health. Visit their
website here.

New Jersey

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

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

Nevada created a Rare Disease Advisory Council in 2019 housed within their Department of Health. Visit their website here.

New York

New York created a rare disease work group in 2020 that will work in collaboration with the Department of Health and Financial Services.

Ohio

Ohio created a Rare Disease Advisory Council in 2020 housed within their Department of Health.

Pennsylvania

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

Oklahoma has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email [email protected].

Oregon

Oregon has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email [email protected].

Rhode Island

Rhode Island has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email [email protected].

South Carolina

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

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

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

Legislation is being actively pursued in Texas to pass a Rare Disease Advisory Council. To get more involved, email [email protected].

Utah

Utah created a Rare Disease Advisory Council in 2020 that is administered by BioUtah Visit their website here.

Virginia

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].

Vermont

Vermont has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email [email protected].

Washington

Legislation is being actively pursued in Washington to pass a Rare Disease Advisory Council. To get more involved, email [email protected].

Wisconsin

Senate Bill 689 is being actively pursued in Wisconsin to create a Rare Disease Advisory Council. To get more involved, email [email protected].

West Virginia

West Virginia created a Rare Disease Advisory Council in 2020 housed within the Department of Health.

Wyoming

Wyoming has not yet created a Rare Disease Advisory Council. Interested in joining a coalition in support of the effort? Email [email protected].

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