Section 41-145-1 - Legislative findings and declarationsThe Legislature finds and declares that:
(a) A rare disease, sometimes called an "orphan disease," is defined as a disease that affects fewer than two hundred thousand (200,000) people.(b) There are seven thousand (7,000) known rare diseases affecting more than twenty-five million (25,000,000) men, women and children in the United States.(c) While the exact cause for many rare diseases remains unknown, eighty percent (80%) of rare diseases are genetic in origin and can be linked to mutations in a single gene or in multiple genes, which can be passed down from generation to generation.(d) People with rare diseases face many challenges, including delays in obtaining a diagnosis, misdiagnosis, shortages of medical specialists who can provide treatment, and lack of access to therapies and medication used to treat rare diseases.(e) An advisory council composed of qualified professionals and persons living with rare diseases could educate medical professionals, governmental agencies, legislators and the public about rare diseases as an important public health issue and encourage and secure funding for research for the development of new treatments for rare diseases.Added by Laws, 2024, ch. 311, SB 2156,§ 1, eff. 7/1/2024.