The Rare Disease Advisory 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.
What is a RARE DISEASE?
Defined as a condition or disorder that affects fewer than 200,000 individuals in the United States. There are approximately 7,000 rare diseases and 25-30 million Americans are affected by these rare disorders. While individuals with certain disorders may be rare, the total number of people with a rare diseases is large.
Information and resources are limited for these individuals and their families creating a myriad of challenges. Obstacles include delayed diagnosis, misdiagnosis, lack of treatment options, high medical care costs, and limited access to medical specialists.
The Nevada RDAC has been established to provide an in-depth understanding for government officials and policymakers. The goal is to address barriers preventing individuals living with rare diseases from obtaining proper treatment, resources, and care for their condition.