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Title:Rare Disease Commission
Website:Rare Disease Commission
Contact Name:Joan Ehrhardt
Contact Title:Department of Public Health
Contact Phone:(217) 557-2566
Contact Comments:
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 This Act is repealed on January 1, 2027.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
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 (Last, First)Term ExpiresMember SinceAffiliationAppointed ByPositionTitleCounty
Barickman, Jason2/28/2017Senate Minority LeaderGeneral Assembly MemberAssistant Republican Leader
Clay, Joyce3/1/20233/26/2021Governor AppointeeGovernorMemberMclean
Cunniff, Timothy3/1/20233/10/2022Governor AppointeeGovernorMemberNone
Feuer, Stacey3/1/20233/26/2021Governor AppointeeGovernorMemberCook
Gross Pollock, Maria3/1/20234/25/2022Governor AppointeeGovernor
Harper, Sonya9/14/2016House SpeakerGeneral Assembly MemberRepresentative
Holmes, Linda1/15/2018Senate PresidentGeneral Assembly MemberSenator
Hughes, TaLana3/1/20233/10/2022Governor AppointeeGovernorMember
Kim, Katherine3/1/20233/26/2021Governor AppointeeGovernorMemberCook
Leverenz, Amy10/1/202010/13/2017Governor AppointeeGovernorMember
Pigott, Stacey Hyland3/1/20265/30/2023Governor AppointeeGovernorMember
Pullen, Laura3/1/20235/14/2021Governor AppointeeGovernorMember
Rothstein, Jason3/1/20233/26/2021Governor AppointeeGovernorMemberCook
VACANT3/1/2023Governor AppointeeGovernorMember
VACANTHouse Minority LeaderGeneral Assembly MemberRepresentative