Meeting Information

Rare Disease Advisory Council Annual Governor & Legislature Report

Compiled annual report to the Governor and Legislature that includes a summary of the council’s activities and any recommendations of the council for legislation or other policies in accordance with SB 315.

About the 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.
  • A specialized license plate to support the Rare Disease Advisory Council and research and treatment for childhood cancer can be purchased through the Nevada DMV Specialized License Plates website.

    Council Members

    The Department of Health and Human Services Rare Disease Advisory 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

    The following Council Member positions are vacant:

     

    • (1) One physician who practices in the area of cardiology, emergency care, neurology, oncology, orthopedics, pediatrics, or primary care and provide care to patients with rare diseases
    • (1) One Division representative who provides education concerning rare diseases or the management of chronic conditions
    • (1) One person over 18 years of age who have suffered from or currently suffer from a rare disease  

     

    If you are interested in being considered for a future Council Member 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 8970

     

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

      Current Members

      • Veneta Lapera BSN, RN
        • Chair of the State Advisory Council on Palliative Care and Quality of Life crated by NRS 232.4855 or his or her designee
        • Chair, Nevada Palliative Care Quality of Life Council
      • Dr. Nik Rashid MD
        • (1) Physician who provides care to patients with rare diseases
        • Medical Director, Hemostasis & Thrombosis Center of Nevada/Sickle Cell Center of Nevada
      • Dr. Susanna Sorrentino M.D., FACMGG, FAAP
        • (2) Physician who provides care to patients with rare diseases
        • Clinical Geneticist, Medical Genetics of Nevada
      • VACANT
        • (3) Physician who provides care to patients with rare diseases
      • Valerie Porter DNP, BSN, MBA
        • (1) Registered nurse who provides care to patients with rare diseases
        • NP Hospitalist – Internal Med Inpatient Service at the VA Southern Nevada Healthcare System
      • Amber Federizo APRN, FNP-BC (Chair)
        • (2) Registered nurse who provides care to patients with rare diseases
        • Nurse Practitioner, Hemostasis & Thrombosis Center of Nevada
      • Annette Logan-Parker
        • (1) Administrator of an organization who provides care to patients with rare diseases
        • Parent & CEO, Cure 4 The Kids Foundation
      • Jennifer Millet MSN, RN
        • (2) Administrator of an organization who provides care to patients with rare diseases
        • Clinical Director of Medical-Surgical Services, University Medical Center of Southern Nevada
      • VACANT
        • Representative of the Division who provides education concerning rare diseases or the management of chronic conditions
      • Dr. Ihsan Azzam MD, PhD
        • Representative of the Division of Public and Behavioral Health who provides epidemiological services
        • Chief Medical Officer, Nevada Division of Public and Behavioral Health (DPBH)
      • Naja Bagner
        • (1) Person over 18 years of age who have suffered from or currently suffer from a rare disease
        • Self-Advocate
      • VACANT
        • (2) Person over 18 years of age who have suffered from or currently suffer from a rare disease
        • Self-Advocate
      • Linetta Barnes BSN, RN
        • (1) Parent or guardian who has experience caring for a child with a rare disease
        • Sickled Not Broken Foundation of Nevada
      • Kimberly Palma-Ortega
        • (2) Parent or guardian who has experience caring for a child with a rare disease
        • Parent-Advocate
      • Gina Glass (Vice Chair)
        • One representative of an organization dedicated to providing services to parents suffering from rare diseases in southern Nevada
        • Executive Director, Dreamsickle Kids Foundation and Parent-Advocate
      • Shirley Folkins-Roberts
        • One representative of an organization dedicated to providing services to parents suffering from rare diseases in northern Nevada
        • Executive Director, Northern Nevada Children’s Cancer Foundation
      • Paul Niedermeyer
        • Voted in by RDAC Council under NRS 439.5075
      • Dr. Craig Vincze
        • Voted in by RDAC Council under NRS 439.5075