WHEREAS, a rare disease or disorder is a physical condition that affects fewer than 200,000 people. Approximately 25 million people in the United States and 400 million worldwide are affected by Rare Diseases and Disorders; and
WHEREAS, there are many different causes of rare diseases and disorders, the majority are thought to be genetic – caused by changes in genes or chromosomes; however, the exact cause of many rare diseases remains unknown, making research, diagnosis, and treatment difficult; and
WHEREAS, individuals and families affected by rare diseases often experience problems associated with feelings of isolation, difficulty obtaining an accurate and timely diagnosis, fewer available treatment options, and issues with being reimbursed for treatment; and
WHEREAS, although perhaps less common and less known among the general public, the devastation that rare diseases and disorders cause is no less severe; and
WHEREAS, Leukodystrophy refers to the group of genetic diseases that predominantly affect the white matter of the central nervous system which slows or blocks messages between the brain and the rest of the body, and they are considered to be progressive diseases; Lissencephaly refers to a rare set of brain malformations which results in parts of the brain becoming smooth and can affect developing fetuses; and Necrotizing Fasciitis refers to a serious bacterial infection that results in the death of the body’s soft tissues and can lead to organ failure; and
WHEREAS, due to limited research and treatment options for the approximately 7,000 conditions designated as rare disease, the process of diagnosing a rare condition can be extremely challenging; and
WHEREAS, Rare Disease and Disorder Day provides an opportunity to raise awareness of the many rare diseases and disorders affecting the lives of countless Alaskans in hopes of finding new research methods, quicker diagnoses, and better treatment options for our neighbors and friends.
NOW THEREFORE, I, Mike Dunleavy, GOVERNOR OF THE STATE OF ALASKA, do hereby proclaim February 28, 2023 as:
Rare Disease and Disorder Day
in Alaska, and encourage all Alaskans to offer support to those who suffer from rare diseases and disorders, promote and raise awareness within their communities, and celebrate the progress being made by medical professionals and researchers worldwide.
Dated: February 28, 2023