The Nevada Rare Disease Advisory Council was formed during the 2019 Legislative Session. Its mission is to improve the lives of those families affected by rare diseases by giving them a stronger voice in state government.
The ‘While You Wait Campaign’ starts this process to determine the incidence of rare diseases in Nevada and the challenges faced by those affected.
Annette Logan-Parker, Nevada Rare Disease Advisory Council Chair, Dr. Joseph Lasky, Medical Director, Cure 4 The Kids Foundation, and Tiffany Ruben, mother of four children affected by an ultra-rare disease called Niemann Pick Disease, Type C, appear on Vegas PBS’ Nevada Week.