Boards and Commissions

Ohio Legislative Service Commission

Rare Disease Advisory Council

Status	Type of Board	Full-time	Expiration Date
Current	Permanent	No	12/31/2026

Subject to Sunset Review	Partisan Affiliation Restriction	Senate Confirmation Required
Yes	No	No

Authority	Total Membership
R.C. 103.60	31

Dates of Appointment		Term Length
Initial appointments not later than 4-23-2021; thereafter appointments not later than 45 days after the commencement of a General Assembly.		Approximately 2 years

Ending Date Of Term	Report Requirements
January of each odd numbered year, when appointments are made following the commencement of a General Assembly.	None

Appointment Authority	Membership Composition
Governor, Senate President, Speaker	House members, Members with other stated qualifications, Public members, Senate members, State agency employees, Statewide elected officials/department heads

Compensation		Staff Assistance
Expenses Only		None specified

Chairperson	Additional Information
Selected by Council from among its members

Qualifications
(1) The following members appointed by the Governor: (a) One individual who is a medical researcher with experience researching rare diseases; (b) One individual who represents an academic research institution in this state that receives funding for rare disease research; (c) One individual authorized under Chapter 4731. of the Revised Code to practice medicine and surgery or osteopathic medicine and surgery who has experience researching, diagnosing, and treating rare diseases; (d) One individual authorized under Chapter 4723. of the Revised Code to practice nursing as a registered nurse who has experience providing nursing care to patients with rare diseases; (e) One individual authorized under Chapter 4778. of the Revised Code to practice as a genetic counselor who is currently practicing at a children's hospital; (f) Three members of the public who are living with a rare disease or represent an individual living with a rare disease; (g) One representative of a national organization representing patients with a rare disease; (h) One representative of a rare disease foundation operating in this state; (i) Two representatives of the Department of Health, one of whom is a representative of the program for children and youth with special health care needs; (j) One representative of the Department of Medicaid; (k) One representative of the Department of Insurance; (l) One representative of the Commission on Minority Health; (m) One representative of the Ohio Hospital Association; (n) One representative of Ohio health insurers; (o) One representative of bioOhio; (p) One representative of the Association of Ohio Health Commissioners; (q) One representative of the Pharmaceutical Research and Manufacturers of America. (2) Two members of the Senate, one from the majority party and one from the minority party, both appointed by the President of the Senate; (3) Two members of the House of Representatives, one from the majority party and one from the minority party, both appointed by the Speaker of the House of Representatives; (4) The governor or the governor's designee; (5) three members of the public appointed by the President of the Senate, one of whom is recommended by the Minority Leader; (6) three members of the public appointed by the Speaker of the House, one of whom is recommended by the Minority Leader.

Qualifications

(1) The following members appointed by the Governor: (a) One individual who is a medical researcher with experience researching rare diseases; (b) One individual who represents an academic research institution in this state that receives funding for rare disease research; (c) One individual authorized under Chapter 4731. of the Revised Code to practice medicine and surgery or osteopathic medicine and surgery who has experience researching, diagnosing, and treating rare diseases; (d) One individual authorized under Chapter 4723. of the Revised Code to practice nursing as a registered nurse who has experience providing nursing care to patients with rare diseases; (e) One individual authorized under Chapter 4778. of the Revised Code to practice as a genetic counselor who is currently practicing at a children's hospital; (f) Three members of the public who are living with a rare disease or represent an individual living with a rare disease; (g) One representative of a national organization representing patients with a rare disease; (h) One representative of a rare disease foundation operating in this state; (i) Two representatives of the Department of Health, one of whom is a representative of the program for children and youth with special health care needs; (j) One representative of the Department of Medicaid; (k) One representative of the Department of Insurance; (l) One representative of the Commission on Minority Health; (m) One representative of the Ohio Hospital Association; (n) One representative of Ohio health insurers; (o) One representative of bioOhio; (p) One representative of the Association of Ohio Health Commissioners; (q) One representative of the Pharmaceutical Research and Manufacturers of America. (2) Two members of the Senate, one from the majority party and one from the minority party, both appointed by the President of the Senate; (3) Two members of the House of Representatives, one from the majority party and one from the minority party, both appointed by the Speaker of the House of Representatives; (4) The governor or the governor's designee; (5) three members of the public appointed by the President of the Senate, one of whom is recommended by the Minority Leader; (6) three members of the public appointed by the Speaker of the House, one of whom is recommended by the Minority Leader.