WHEREAS, according to the Center for Disease Control, a rare disease is a condition that, alone, affects fewer than 200,000 people in the United States. Collectively, rare diseases affect approximately 30 million people in the United States, and 400 million worldwide; and
WHEREAS, although 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 causes of many rare diseases remain unknown, making research, diagnosis, and treatment difficult; and
WHEREAS, some rare diseases and disorders, such as Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis (ALS), are relatively well known because of successful awareness campaigns, many are not, such as Neuromyelitis Optica Spectrum disorder (NMOSD), which affects the optic nerves and spinal cord, causing pain and vision loss, which leads to weakness, numbness, and sometimes paralysis of all four limbs; and
WHEREAS, Congenital Diaphragmatic Hernia (CDH) is a devastating birth defect where the diaphragm does not completely form in utero. It occurs as often as Spina Bifida and Cystic Fibrosis, yet national awareness is minimal; and
WHEREAS, with approximately 7,000 conditions designated as rare diseases, and limited research and treatment options, the process of diagnoses 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, which can lead to more research, quicker diagnoses, and better treatment options for our neighbors and friends.
NOW THEREFORE, I, Michael J. Dunleavy, GOVERNOR OF THE STATE OF ALASKA, do hereby proclaim February 28, 2019 as:
Rare Disease and Disorder Day
in Alaska, and encourage all Alaskans to support those with 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 21, 2019