31-50-1. Legislative findings.

The General Assembly finds that:

A rare disease, sometimes called an orphan disease, is defined as a disease that affects fewer than 200,000 people in the United States;#

There are more than 7,000 known rare diseases affecting approximately 25-30 million Americans, more than half of which are children;#

More than 90 percent of rare diseases do not have a federal Food and Drug Administration (FDA) approved treatment;#

While the exact cause of 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;#

People with rare diseases face many challenges, including delays in obtaining an accurate diagnosis, finding a health care provider with expertise in their condition, and a lack of affordable access to therapies and medications used to treat rare diseases; and#

A state based advisory council composed of qualified professionals and persons living with rare diseases and their caregivers could educate medical professionals, government agencies, legislators, and the public about rare diseases as an important public health issue and encourage research into the development of new ways to diagnose and treat rare diseases.#