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Rare Disease Advisory Councils by State
Don’t see your state? Contact us at info@gararedisease.org.
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:
Chair:
Dr. Bruce Korf,
Chief Genomics Officer at UAB,
bkorf@uab.edu
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 Repealed Sept. 31, 2032 unless the extended through the sunset process.
Website:
Point of Contact:
Contact Form: 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 Florida Department of Health.
Website:
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.
Website:
gararedisease.org
Chair:
Beth Nguyen (Chair) & Maria Thacker-Goethe (Secretariat)
info@gararedisease.org
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.
Website:
n/a
Chair:
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
Website:
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
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,Chair; Founder and Executive Director of Rare New England, julie@rarenewengland.org
MINNESOTA
Date Bill Signed into Law:
2019
Statutory Language:
MN 256.4835
How Council is Administered:
Administered through Minnesota Council on Disability
Website:
Point of Contact:
Erica Barnes, Executive Director, erica.barnes@state.mn.us
MISSOURI
Date Bill Signed into Law:
2018
Bill Number & Language:
SB 995
How Council is Administered:
Administered within the Missouri Healthnet Division
Website:
Point of Contact:
Kathleen Henry, NORD MO Rare Action Network Ambassador, kathleen.henry@rareaction.org
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:
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:
Chair & Point of Contact:
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 Contact:
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:
Chair:
Marie Conley, Founder of The Conley Cushing Disease Fund, marie.conley@live.com
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
Website:
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:
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:
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:
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:
Chair/Point of Contact:
Kenny Brooks, NORD WV Rare Action Network State Ambassador, kenny.brooks@rareaction.org
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