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Title:Rare Disease Commission
Website:http://dph.illinois.gov/content/illinois-rare-diseases-commission
Contact Name:Department of Public Health
Contact Phone:(217) 557-2566
Function:To advise the State on issues pertaining to the care and treatment of individuals with rare diseases.
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 (Last, First)Term ExpiresMember SinceAffiliationAppointed ByPositionTitleCounty
Barickman, Jason2/28/2017Senate Minority LeaderGeneral Assembly MemberAssistant Republican Leader
Bellefeuille, Maria3/1/20203/10/2017Governor AppointeeGovernorMember
Bellock, Patricia3/1/20203/3/2017Governor AppointeeGovernorMember
Burton, Barbara11/1/202011/20/2017Governor AppointeeGovernorMember
Hammer, Jennifer3/1/20203/3/2017Governor AppointeeGovernorMember
Harper, Sonya9/14/2016House SpeakerGeneral Assembly MemberRepresentative
Holmes, Linda1/1/20201/15/2018Senate PresidentGeneral Assembly MemberSenator
Leverenz, Amy10/1/202010/13/2017Governor AppointeeGovernorMember
Olsen, David9/21/2016House Minority LeaderGeneral Assembly MemberRepresentative
Presta, Christine3/1/20203/3/2017Governor AppointeeGovernorMember
Shah, Nirav3/1/20203/3/2017Governor AppointeeGovernorMember
Tarantino, Michael3/1/20203/3/2017Dr.
VACANTGovernor AppointeeGovernorMember
VanHoutan, Tracy12/21/202012/21/2017Governor AppointeeGovernorMember
Weaver, Ann12/1/202010/26/2017Governor AppointeeGovernorMember