1. The Rare Disease Advisory Council created by NRS 439.5075 shall: (a) Perform a statistical and qualitative examination of the incidence, causes and economic burden of rare diseases in this State; (b) 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; (c) Increase awareness of the burden caused by rare diseases in this State; (d) Identify evidence-based strategies to prevent and control rare diseases; (e) Determine the effect of delayed or inappropriate treatment on the quality of life for patients suffering from rare diseases and the economy of this State; (f) Study the effect of early treatment for rare diseases on the quality of life for patients suffering from rare diseases, the provision of services to such patients and reimbursement for such services; (g) Increase awareness among providers of health care of the symptoms of and care for patients with rare diseases; (h) Evaluate the systems for delivery of treatment for rare diseases in place in this State and develop recommendations to increase the survival rates and quality of life of patients with rare diseases; (i) Determine effective methods of collecting data concerning cases of rare diseases in this State for the purpose of conducting epidemiological studies of rare diseases in this State; (j) Establish a comprehensive plan for the management of rare diseases in this State, which must include, without limitation, recommendations for the Department, the Division, local health districts, public and private organizations, businesses and potential sources of funding, and update the comprehensive plan as necessary; and (k) Develop a registry of rare diseases diagnosed in this State to determine the genetic and environmental factors that contribute to such rare diseases. 2. The Council shall compile an annual report which must include, without limitation, a summary of the activities of the Council and any recommendations of the Council for legislation or other policies. The Council shall: (a) Post the report on an Internet website maintained by the Department; and (b) Submit the report to the Department, the Governor and the Director of the Legislative Counsel Bureau for transmittal to: (1) In even-numbered years, the next regular session of the Legislature; and (2) In odd-numbered years, the Joint Interim Standing Committee on Health and Human Services. 3. As used in this section, provider of health care has the meaning ascribed to it in NRS 629.031 .
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