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, many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected. Individuals and families affected by rare diseases often experience problems such as a sense of isolation, difficulty obtaining an accurate and timely diagnosis, few treatment options, and problems related to accessing or being reimbursed for treatment; and
WHEREAS, some rare diseases and disorders, such as Huntington’s Disease are relatively well known because of successful awareness campaigns, many are not, such as Evan’s syndrome, a very rare autoimmune disorder, which causes the sufferer’s immune system to destroy their body’s red and white blood cells, and/or platelets. This syndrome can cause symptoms such as fatigue and light-headedness; and
WHEREAS, Lafora disease, a severe form of progressive myoclonus epilepsy, is a genetic disorder in which the person has epileptic seizures in late childhood or adolescence. Those suffering from Lafora disease may also experience symptoms such as, difficulty walking, muscle spasms, dementia, and rapid cognitive deterioration. This condition often ends in death; 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, Mike Dunleavy, GOVERNOR OF THE STATE OF ALASKA, do hereby proclaim February 28, 2022 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, 2022