LAS VEGAS – January 19, 2023 – Annette Logan-Parker, founder and CEO of Cure 4 The Kids Foundation, Nevada’s premier pediatric cancer and rare disease treatment center, has been selected as chairperson of The Nevada Rare Disease Advisory Council (NVRDAC).
NVRDAC was formed under SB315 during Nevada’s 2019 Legislative Session. The council’s mission as an advising body is to provide a platform for those who are affected by rare diseases, including pediatric cancer. The council’s goal is to provide the rare disease community with a stronger voice in state government, including the ability to make recommendations to state leaders.
“I’m excited to help bring greater awareness and attention to the many rare diseases that affect Nevada patients and their families,” said Annette Logan-Parker. “We’re fortunate that Nevada is among the states looking to study the incidence and effect of rare diseases on patients, their families and the community. It’s a great first step.”
Among the objectives of the council is to create a statewide registry of rare diseases diagnosed in Nevada to help determine the genetic and environmental factors that contribute to rare diseases.
Other NVRDAC objectives include:
- Increase awareness among providers of health care of the symptoms of and care for patients with rare diseases
- Study the effect of early treatment for rare disease on the quality of life for patients suffering from rare disease
- Determine the effect of delayed or inappropriate treatment on the quality o life for patentees suffering from rare disease and the economy of Nevada.
- Evaluate the systems for delivery of treatment for rare disease in place in Nevada and development recommendation to increase survival rates and quality of life of patients
A rare disease is 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.