(1) The general assembly finds and declares that: (a) A rare disease, sometimes called an "orphan" disease, is a disease that affects fewer than two hundred thousand people in the United States; (b) There are seven thousand known rare diseases affecting approximately thirty million adults and children in the United States; (c) While the exact cause for many rare diseases remains unknown, many 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 affordable access to therapies and medication used to treat rare diseases; and (e) A Colorado rare disease advisory council composed of qualified professionals and people living with rare diseases could educate medical professionals, government agencies, legislators, and the public about rare diseases as an important public health issue and encourage research for the development of new treatments for rare diseases.
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