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<section article="ghg" article_name="Health - General" number="13-5002" title_number="13" title_name="Miscellaneous Health Care Programs" subtitle_number="50" subtitle_name="Rare Disease Advisory Council">
  <level label="a">
    <text>The Council consists of the following members:</text>
    <level label="1">
      <text>One member of the Senate of Maryland, appointed by the President of the Senate;</text>
    </level>
    <level label="2">
      <text>One member of the House of Delegates, appointed by the Speaker of the House;</text>
    </level>
    <level label="3">
      <text>The Secretary, or the Secretary’s designee;</text>
    </level>
    <level label="4">
      <text>The chair of the State Advisory Council on Hereditary and Congenital Disorders, or the chair’s designee;</text>
    </level>
    <level label="5">
      <text>One representative of the Office of Minority Health and Health Disparities, designated by the Director of the Office;</text>
    </level>
    <level label="6">
      <text>One representative of the Maryland Medical Assistance Program, designated by the Secretary;</text>
    </level>
    <level label="7">
      <text>One representative of the Maryland Insurance Administration, designated by the Maryland Insurance Commissioner; and</text>
    </level>
    <level label="8">
      <text>The following members, appointed by the Governor:</text>
      <level label="i">
        <text>One representative of an academic research institution that receives grant funding for rare disease research;</text>
      </level>
      <level label="ii">
        <text>One geneticist licensed and practicing in the State;</text>
      </level>
      <level label="iii">
        <text>One registered nurse or advanced practice registered nurse licensed and practicing in the State with experience treating rare diseases;</text>
      </level>
      <level label="iv">
        <text>One physician licensed in the State with experience treating rare diseases;</text>
      </level>
      <level label="v">
        <text>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;</text>
      </level>
      <level label="vi">
        <text>One pharmacist licensed in the State with experience dispensing drugs used to treat rare diseases;</text>
      </level>
      <level label="vii">
        <text>Two individuals who have been diagnosed with a rare disease;</text>
      </level>
      <level label="viii">
        <text>One caregiver of an individual with a rare disease;</text>
      </level>
      <level label="ix">
        <text>One representative of a rare disease patient organization that operates in the State;</text>
      </level>
      <level label="x">
        <text>One representative of the biopharmaceutical industry;</text>
      </level>
      <level label="xi">
        <text>One representative of a health insurance carrier providing health insurance coverage in the State;</text>
      </level>
      <level label="xii">
        <text>One member of the scientific community who is engaged in rare disease research; and</text>
      </level>
      <level label="xiii">
        <text>One representative of an organization that provides care management for individuals enrolled in the State’s Rare and Expensive Case Management Program.</text>
      </level>
    </level>
  </level>
  <level label="b">
    <text>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.</text>
  </level>
  <level label="c">
    <text>All members of the Council must be full–time residents of the State.</text>
  </level>
  <level label="d">
    <level label="1">
      <text>The term of an appointed member is 3 years.</text>
    </level>
    <level label="2">
      <text>If a vacancy occurs on the Council, the members of the Council shall appoint an individual to fill the vacancy by majority vote.</text>
    </level>
  </level>
  <level label="e">
    <level label="1">
      <text>The Governor shall designate the initial chair of the Council to serve a term of 3 years.</text>
    </level>
    <level label="2">
      <text>The initial chair designated by the Governor may not hold a position within State government.</text>
    </level>
    <level label="3">
      <text>At the end of the term of the initial chair, the members of the Council shall designate a new chair by majority vote.</text>
    </level>
    <level label="4">
      <text>Except as provided in paragraph (1) of this subsection, the term of a chair of the Council is 2 years.</text>
    </level>
  </level>
  <level label="f">
    <text>The Department shall provide staff for the Council.</text>
  </level>
  <level label="g">
    <text>A member of the Council:</text>
    <level label="1">
      <text>May not receive compensation as a member of the Council; but</text>
    </level>
    <level label="2">
      <text>Is entitled to reimbursement for expenses under the Standard State Travel Regulations, as provided in the State budget.</text>
    </level>
  </level>
  <level label="h">
    <level label="1">
      <text>The initial meeting of the Council shall occur on or before December 30, 2024.</text>
    </level>
    <level label="2">
      <text>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.</text>
    </level>
    <level label="3">
      <text>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.</text>
    </level>
  </level>
</section>
