(a) The Delaware Rare Disease Advisory Council (Council) shall be established within the Office of the Lieutenant Governor to advise the General Assembly and other government agencies and departments, as appropriate, on the needs of individuals with rare diseases living in Delaware.
(b) The Council shall conduct the following activities to benefit rare disease patients in Delaware:
(1) Convene public hearings, make inquiries, and solicit comments from the general public in Delaware to assist the Council with a landscape or survey of the needs of rare disease patients, caregivers, and providers in the State.
(2) Consult with experts on rare diseases on the Council and externally, as needed, to develop policy recommendations to improve patient access to and quality of rare disease specialists, affordable and comprehensive health-care coverage, relevant diagnostics, timely treatment, and other needed services.
(3) Research and make recommendations to state agencies and insurers that provide services to persons with a rare disease on the impact of coverage, cost-sharing, tiering, or other utilization management procedures on the provision of treatment and care services.
(4) Research and identify priorities related to treatments and services provided to persons with rare diseases in Delaware, and develop policy recommendations that include safeguards against discrimination for these populations on such issues, including in disaster and public health emergency-related planning.
(5) Publish a list of existing, publicly-accessible resources on research, diagnosis, treatment, and education relating to the rare diseases in Delaware on the Council’s website.
(6) Identify areas of unmet need for research that can inform future studies and reports by the Council.
(7) Establish resources for academic institutions, state agencies, health-care professionals, and other entities to provide training to employees on rare diseases in Delaware.
(8) Identify and distribute educational resources for health-care providers to foster recognition and optimize treatment of rare diseases in Delaware.
(9) Research and identify best practices to reduce health disparities and achieve health equity in the research, diagnosis, and treatment of rare disease in Delaware.
(10) Establish best practices and protocols to use during a state of emergency to aid rare disease patients.
(c) The Council is comprised of 14 members:
(1) One representative from an academic research institution in the State that receives any grant funding for rare disease research, appointed by the Governor.
(2) One member of the Delaware House of Representatives, appointed by the Speaker of the House.
(3) One member of the Delaware State Senate, appointed by the President Pro Tempore.
(4) The Secretary of the Department of Health and Social Services serving by virtue of position, or the Secretary’s designee.
(5) The Insurance Commissioner serving by virtue of position, or the Commissioner’s designee.
(6) One geneticist licensed and practicing in Delaware, appointed by the Governor.
(7) One registered physician, nurse, or advanced practice registered nurse licensed and practicing in Delaware with experience treating rare diseases, appointed by the Governor.
(8) One hospital administrator, or their designee, from an acute care hospital in Delaware that provides care to persons diagnosed with a rare disease, appointed by the Governor.
(9) A Delaware resident who either has a rare disease or has experience caring for a person with a rare disease.
(10) A second Delaware resident who either has a rare disease or has experience caring for a person with a rare disease.
(11) One administrator, or their designee, from a biopharma manufacturer, appointed by the Governor.
(12) One licensed genetic counselor, appointed by the Governor.
(13) A pharmacist with experience dispensing drugs used to treat rare diseases, appointed by the Governor.
(14) A member of the scientific community who is engaged in rare disease research, including, but not limited to, a medical researcher with experience conducting research on rare disease, appointed by the Governor.
(d) The Council shall annually elect a chair from among its members. A chair is eligible for reelection.
(e) Each council member is appointed for a term of 3 years. Each term of office expires on the date specified in the appointment; however, a member remains eligible to participate in council proceedings until the Governor replaces that member. The Governor may appoint a member for a term of less than 3 years to ensure that members’ terms expire on a staggered basis.
(f)Reporting. —
(1) The Council shall submit a report to the Governor by July 26, 2026, and every 3 years thereafter.
(2) A draft of the annual report shall be provided for public comment and discussed at an open public meeting, before it is completed and submitted to the Governor.
(3) Reports shall:
a. Describe the accomplishments and progress of the Council in conducting the activities set forth above.
b. Provide recommendations to the Governor and General Assembly on ways to address the needs of people living with rare diseases in Delaware.
(g) The University of Delaware Institute for Public Administration shall staff the Council. An annual line item allocation of funding must be provided to the Council to support the operational services carried out by the University of Delaware.