(a) The Council consists of the following members: (1) One member of the Senate of Maryland, appointed by the President of the Senate; (2) One member of the House of Delegates, appointed by the Speaker of the House; (3) The Secretary, or the Secretary's designee; (4) The chair of the State Advisory Council on Hereditary and Congenital Disorders, or the chair's designee; (5) One representative of the Office of Minority Health and Health Disparities, designated by the Director of the Office; (6) One representative of the Maryland Medical Assistance Program, designated by the Secretary; (7) One representative of the Maryland Insurance Administration, designated by the Maryland Insurance Commissioner; and (8) The following members, appointed by the Governor: (i) One representative of an academic research institution that receives grant funding for rare disease research; (ii) One geneticist licensed and practicing in the State; (iii) One registered nurse or advanced practice registered nurse licensed and practicing in the State with experience treating rare diseases; (iv) One physician licensed in the State with experience treating rare diseases; (v) One hospital administrator, or the designee of a hospital administrator, from a hospital in the State that provides care to individuals diagnosed with a rare disease; (vi) One pharmacist licensed in the State with experience dispensing drugs used to treat rare diseases; (vii) Two individuals who have been diagnosed with a rare disease; (viii) One caregiver of an individual with a rare disease; (ix) One representative of a rare disease patient organization that operates in the State; (x) One representative of the biopharmaceutical industry; (xi) One representative of a health insurance carrier providing health insurance coverage in the State; (xii) One member of the scientific community who is engaged in rare disease research; and (xiii) One representative of an organization that provides care management for individuals enrolled in the State's Rare and Expensive Case Management Program. (b) For the appointed members of the Council, the appointment process shall be conducted in a transparent manner to provide interested individuals an opportunity to apply. (c) All members of the Council must be full-time residents of the State. (d) (1) The term of an appointed member is 3 years. (2) If a vacancy occurs on the Council, the members of the Council shall appoint an individual to fill the vacancy by majority vote. (e) (1) The Governor shall designate the initial chair of the Council to serve a term of 3 years. (2) The initial chair designated by the Governor may not hold a position within State government. (3) At the end of the term of the initial chair, the members of the Council shall designate a new chair by majority vote. (4) Except as provided in paragraph (1) of this subsection, the term of a chair of the Council is 2 years. (f) The Department shall provide staff for the Council. (g) A member of the Council: (1) May not receive compensation as a member of the Council; but (2) Is entitled to reimbursement for expenses under the Standard State Travel Regulations, as provided in the State budget. (h) (1) The initial meeting of the Council shall occur on or before December 30, 2024. (2) On or before October 1, 2025, the Council shall meet at least once per month in person or through an online meeting platform at a time designated by the chair. (3) After October 1, 2025, the Council shall meet at least once per quarter in person or through an online meeting platform at a time designated by the chair.
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