Rare Disease Commission

Board and Commission Details

Contact Name

Joan Ehrhardt

Contact Title

Department of Public Health

Contact Phone

217 782 0843

Function

To advise the State on issues pertaining to the care and treatment of individuals with rare diseases. This Act is repealed on January 1, 2027.

Term

3 years. No member shall serve more than 2 consecutive terms. Members shall serve until a successor is appointed and qualified. Vacancies shall be filled in the same manner as the initial appointments. Appointments to fill vacancies occurring before the expiration of a term shall be for the remainder of theunexpired term. The Governor, House Speaker, House Minority Leader, Senate President, and Senate Minority Leader shall make their initial appointments to the Commission by February 1, 2017.

Senate Confirmation

No

Compensation

N/A

Composition

15 Members: 11 appointed by the Governor, residents of the State whose position, knowledge, or experience enables them to reasonably represent the concerns, needs, and recommendations of those with rare diseases, including physicians or health care providers who treat patients with a rare disease, 5 members, at minimum, shall be persons who either have a rare disease or are a family member; 4 General Assembly members, 1 appointed by the Senate President, 1 appointed by the Senate Minority Leader, 1 appointed by the House Speaker, 1 appointed by the House Minority Leader

Authority

410 ILCS 445


Member Names

Name Member Expiration Member Since Affiliation Appointed By Position Title County
VACANT 03/01/2023 Governor Member
VACANT Governor Member Cook
Feuer, Stacey 03/01/2023 03/26/2021 Governor Member Cook
Bellefeuille, Maria 10/01/2026 10/11/2024 Governor Member Lake
Hughes, TaLana 03/01/2023 03/10/2022 Governor Member
Clay, Joyce 03/01/2026 03/26/2021 Governor Member McLean
Cunniff, Timothy 03/01/2023 03/10/2022 Governor Member
Gross Pollock, Maria 03/01/2026 04/25/2022 Governor Cook
Pigott, Stacey Hyland 03/01/2026 05/30/2023 Governor Member
VACANT 03/01/2023 03/26/2021 Governor Member Cook
VACANT House Minority Leader General Assembly Member Representative
Harper, Sonya 09/14/2016 House Speaker General Assembly Member Representative
Barickman, Jason 02/28/2017 Senate Minority Leader General Assembly Member Assistant Republican Leader
Holmes, Linda 01/15/2018 Senate President General Assembly Member Senator
Pullen, Laura 03/01/2023 05/14/2021 Governor Member