WHEREAS, a rare disease or disorder is a physical condition that affects fewer than 200,000 people. Approximately 30 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, but the majority are thought to be genetic and 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, few 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 than that of common diseases and disorders; and
WHEREAS, Neuromyelitis Optica Spectrum Disorder (NMOSD) is a neuroimmune condition that currently has no cure, in which the immune system attacks cells in the central nervous system, which can cause permanent disabilities such as blindness and paralysis; Arthrogryposis Multiplex Congenita (AMC) is a rare disorder detected at birth and characterized by joint stiffness and muscle weakness, with treatments ranging from physical therapy to surgery; and Usher Syndrome refers to a genetic disease that involves loss of hearing and vision that can worsen over time, with treatments that may include cochlear implants, hearing aids, low vision support, and counseling; and
WHEREAS, due to limited research and treatment options for the approximately 7,000 conditions designated as rare diseases, 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 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 29, 2024 as:
Rare Disease and Disorder Day
in Alaska, and urge 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 made by medical professionals and researchers worldwide.
Dated: February 29, 2024
