A Rare Disease Advisory Council (RDAC) acts as an advisory body that supports the rare disease community at a state government level. Their purpose is to provide policy advisement. They work to identify and address barriers that prevent individuals with rare diseases from accessing proper treatment and care. RDACs are created by state legislation.
Alabama
Date Bill Signed into Law: 2017
Bill Number & Language: HR 115
How Council is Administered: Administered through The University of Alabama at Birmingham (UAB) with State Health Officer (Director of Alabama Department of Public Health) as an ex-officio member.
Website: https://alabamararediseasecouncil.org/
Chair:
Dr. Bruce Korf
Chief Genomics Officer at UAB
bkorf@uab.edu
Arizona
Date Bill Signed into Law: 2025
Bill Number & Language: HR 2758
How Council is Administered: Administered through the Arizona Department of Health.
Website: https://www.azdhs.gov/
Contact: ARDAC@azdhs.gov
California
Date Bill Signed into Law: 2024
Bill Number & Language: AB 2613
How Council is Administered: Administered through the National Organization for Rare Disorders.
Website: https://rarediseases.org/state/california/
Colorado
Date Bill Signed into Law: 2022
Bill Number & Language: S.B. 186
How Council is Administered: Administered through the Department of Public Health and Environment. Repealed Sept. 31, 2032 unless the extended through the sunset process.
Websites: https://cdphe.colorado.gov/rare-disease-advisory-council
Point of Contact:
Rare Disease Advisory Council (RDAC) – Contact Us (google.com)
Connecticut
Date Bill Signed into Law: 2022
Bill Number & Language: H.B. 5260
How Council is Administered: The council shall advise and make recommendations to the Department of Public Health.
Point of Contact:
Lesley Bennett
Member of 2017 Task Force
lesley.bennett@rareaction.org
Delaware
Date Bill Signed into Law: 2023
Bill Number & Language: SB55
How Council is Administered: Established within the Department of Health and Social Services.
Florida
Date Bill Signed into Law: 2022
Bill Number & Language: Florida Statute Section 381.99
How Council is Administered: Created adjunct to the Department of Health.
Websites: Rare Disease Advisory Council | Florida Department of Health (floridahealth.gov)
Point of Contact:
Melissa Jordan (Chair)
health@flhealth.gov
Georgia
Date Bill Signed into Law: 2022
Bill Number & Language: HB 918
How Council is Administered: Appointments are made by the Governor, Lieutenant Governor, and Speaker of the House to advise state agencies and departments.
Point of Contact:
Interim Director of Communications
Andrew Isenhour
andrew.isenhour@georgia.gov
Illinois
Date Bill Signed into Law: 2016
Bill Number & Language: HB 4576
How Council is Administered: The Department of Public Health shall provide administrative and other support to the Commission.
Chair/Point of Contact: Maria Bellefeuille (Chair)
Indiana
Date Bill Signed into Law: 2023
Bill Number & Language: H.B. 1201
How Council is Administered: The State Department shall provide administrative assistance.
Point of Contact:
Santiago Schnell
sschnel2@nd.edu
Kentucky
Date Bill Signed into Law: 2019
Bill Number & Language: SB 16
How Council is Administered: Administered by a nonprofit organization that operates within Kentucky and has experience working in the field of rare diseases
Chair:
Patrick Dunegan
NORD KY Rare Action Ambassador
patrick.dunegan@rareaction.org
Louisiana
Date Bill Signed into Law: 2021
Bill Number & Language: H.B. 460
How Council is Administered: Created and administered within the Louisiana Department of Health.
Websites: https://www.legis.la.gov/legis/BoardMembers.aspx?boardId=1161
Point of Contact:
Rodney Goldsmith
rodney.goldsmith@la.gov
Maine
Date Bill Signed into Law: 2022
Bill Number & Language: H.P. 718
How Council is Administered: Established and administered within Maine Department of Health and Human Services
Maryland
Date Bill Signed into Law: 2023
Bill Number & Language: S.B. 188
Website: https://health.maryland.gov/phpa/cyshcn/Pages/Rare-Disease-Advisory-Council.aspx
Contact: https://health.maryland.gov/Pages/contactus.aspx
Massachusetts
Date Bill Signed into Law: 2020
Bill Number & Language: S. 2984
How Council is Administered: Administered within the Department of Public Health
Point of Contact:
Julie Gortze
Founder and Executive Director of Rare New England
julie@rarenewengland.org
Michigan
Date Bill Signed into Law: 2024
Bill Number & Language: Hb. 4167
How Council is Administered: Administered within the Department of Public Health
Contact: MDHHS-RareDiseases@michigan.gov
Minnesota
Date Bill Signed into Law: 2019
Statutory Language: MN 256.4835
How Council is Administered: Administered through Minnesota Council on Disability
Websites: https://www.disability.state.mn.us/rdac/
Point of Contact:
Erica Barnes
Executive Director
erica.barnes@state.mn.us
Mississippi
Date Bill Signed into Law: 2024
Statutory Language: SB 2156
How Council is Administered: Administered through the Univeristy of Mississippi Medical Center
Websites: https://www.ms.gov/dfa/pmn/Home/NoticeDetails/b3b4b4b2-20ef-4514-bb13-f6b2e368a057
Point of Contact:
Jane Griffin Dussouy
jdussouy@umc.edu
Missouri
Date Bill Signed into Law: 2018
Bill Number & Language: SB 995
How Council is Administered: Administered within the Missouri Healthnet Division
Website: https://dss.mo.gov/mhd/cs/advisory/rdac/
Point of Contact: https://mydss.mo.gov/
Montana
Date Bill Signed into Law: 2025
Bill Number & Language: MT HB943
How Council is Administered: Administered within the Montana Department of Health and Human Services
Website: https://dphhs.mt.gov/boardscouncils/RareDiseaseAdvisoryCouncil
Point of Contact: jeremy.royal@mt.gov
Nevada
Date Bill Signed into Law: 2019
Bill Number & Language: SB 135
How Council is Administered: Administered within The Department of Health
Point of Contact:
Georgene (Gina) Glass
Founder & President of Dream Sickle Kids Foundation
ginaglass@dreamsicklekids.org
New Hampshire
Date Bill Signed into Law: 2019
Bill Number & Language: H 237
How Council is Administered: Administered within the Department of Health and Human Services.
Point of Contact:
Krista Gilbert
Member (parent/guardian of a child with a rare disorder) of Council
NORD NH Rare Action Network Community Engagement Liasion
krista.gilbert@rareaction.org
New Jersey
Date Bill Signed into Law: 2021
Bill Number & Language: S.B. 2682
How Council is Administered: Administered in the Department of Health.
New York
Date Bill Signed into Law: 2020
Bill Number & Language: S.B. 7172
How Council is Administered: Administered within the New York State Department of Health.
Website: https://www.health.ny.gov/diseases/rare_disease_workgroup/
Point of Contact:
Mary Wootten
NORD NY Rare Action Ambassador
mary.wootten@rareaction.org
North Carolina
Date Bill Signed into Law: 2015
Bill Number & Language: H.B. 823
How Council is Administered: Administered through the School of Medicine at University of North Carolina at Chapel Hill (UNC).
Website: https://ncrarediseasenetwork.org/
Chair & Point of Contacts
Tara Britt
Associate Chair of NC Rare Disease Advisory Council
Founder & President of Rare Disease Innovation Institute
tjbritt@rdii.org
Ohio
Date Bill Signed into Law: 2020
Bill Number & Language: H.B. 412
How Council is Administered: Administered within the Ohio Department of Health.
Point of Contacts:
Randi Clites
Rare Disease Policy Director for Little Hercules Foundation & Previous OH State Legislator
Member of Council
randi@littleherculesfoundation.org
Pennsylvania
Date Bill Signed into Law: 2017
Bill Number & Language: H.B. 239
How Council is Administered: Works with The Department of Health of the Commonwealth.
Website: https://pardac.org/
Chair:
Marie Conley
Founder of The Conley Cushing Disease Fund
marie.conley@live.com
Rhode Island
Date Bill Signed into Law: 2025
Bill Number & Language: S 0474
How Council is Administered: Housed within the Rhode Island Department of Health
Websites: https://health.ri.gov/
Contact: 401-222-5960
South Carolina
Date Bill Signed into Law: 2021
Bill Number & Language: H.B. 3956
How Council is Administered: Housed within the Medical University of South Carolina
Websites: https://rarediseasesc.org/
Point of Contact:
Patrick Flume (Chair)
abbottt@musc.edu
Tennessee
Date Bill Signed into Law: 2020
Bill Number & Language: S.B. 2124
How Council is Administered: Administratively attached to the bureau of TennCare
Website: https://tnrdac.org/
Chair/Point of Contact:
Terry Jo Vetters Bichell (Vice Chairperson)
NORD TN Rare Action Ambassador, Founder of COMBINEDBrain
terryjo.bichell@rareaction.org
Utah
Date Bill Signed into Law: 2020
Bill Number & Language: HB 106
How Council is Administered: Administered within the Department of Health
Website: https://health.utah.gov/rdac/
Chair/Point of Contact:
Denise Bell
denise@bioutah.org
Virginia
Date Bill Signed into Law: 2021
Bill Number & Language: HB 1995
How Council is Administered: Staff for the Council is provided by the Department of Health. All agencies of the Commonwealth shall provide assistance to the council upon request.
Website: https://www.vdh.virginia.gov/rare-disease-council/
Point of Contact
Jana Monaco
NORD VA Rare Action Network State Ambassador
jana.monaco@rareaction.org
West Virginia
Date Bill Signed into Law: 2020
Bill Number & Language: SB 269
How Council is Administered: Works with the West Virginia Department of Health and Human Resources.
Website: https://wvrare.org/
Chair/Point of Contact
Kenny Brooks
NORD WV Rare Action Network State Ambassador
kenny.brooks@rareaction.org
Don’t see your state? Please contact advocacy@rareadvocates.org with any questions.
