Rare Disease Advisory Council

The Rare Disease Council was formed under SB 315 during the 2019 session of the Nevada Legislature. The council’s duties are to:

  • Perform a statistical and qualitative examination of the incidence, causes and economic burden of rare diseases in Nevada;
  • Receive and consider reports and testimony concerning rare diseases from persons, the Division, community-based organizations, providers of health care and other local and national organizations whose work relates to rare diseases;
  • Increase awareness of the burden caused by rare diseases in Nevada;
  • Identify evidence-based strategies to prevent and control rare diseases;
  • Determine the effect of delayed or inappropriate treatment on the quality of life for patients suffering from rare diseases and the economy of Nevada;
  • Study the effect of early treatment for rare disease on the quality of life for patients suffering from rare diseases, the provision of services to such patients and reimbursement for such services;
  • Increase awareness among providers of health care of the symptoms of and care for patients with rare diseases;
  • Evaluate the systems for delivery of treatment for rare diseases in place in Nevada and develop recommendations to increase the survival rates and quality of life of patients with rare diseases;
  • Determine effective methods of collecting data concerning case of rare diseases in Nevada for the purpose of conducting epidemiological studies of rare diseases;
  • Establish a comprehensive plan for the management of rare diseases in Nevada, which must include recommendations for the state and local health authorities, public and private organizations, businesses and potential sources of funding, and update the comprehensive plan as necessary;
  • Develop a registry of rare diseases diagnosed in Nevada to determine the genetic and environmental factors that contribute to such rare diseases; and
  • Compile an annual report that includes a summary of the council’s activities and any recommendations of the council for legislation or other policies.

    Council Members Needed

    The Department of Health and Human Services is seeking members for the Rare Disease Advisory Council. The council will consist of:

    • Physicians who practice in the area of cardiology, emergency care, neurology, oncology, orthopedics, pediatrics or primary care and provide care to patients with rare diseases
    • Nurses who provide care to patients with rare diseases
    • Administrators of hospitals that provide care to patients with rare diseases or their designees
    • Individuals aged 18 years or older with a rare disease and parents/guardians of children who have been affected by a rare disease
    • Organizations who provide services to patients with a rare disease

    If you are interested in being considered for appointment to the RDAC, contact Julia Peek, Deputy Administrator, by phone 775-684-5902, by email at jpeek@health.nv.gov, or by mail at: 4150 Technology Way, Ste. 300, Carson City, NV 89706

     

    Please submit a letter of interest and a resume or curriculum vitae by Sept. 9, 2019. Materials submitted will be forwarded to the DHHS director for consideration for possible appointment.