Rare Disease and Disorder Day February 27, 2018 WHEREAS, a rare disease or disorder is defined as affecting less than 200,000 people in the United States, and while each disease is rare, taken together, this group of disorders impacts nearly 1 in 10 Americans, and about half of those effected are children; and WHEREAS, approximately 80 percent of rare diseases and disorders have genetic components, with other potential causes of rare diseases and disorders ranging from infections to allergies to environmental factors; and WHEREAS, patients, along with their families and caregivers, often experience feelings of isolation, difficulty obtaining accurate and timely diagnosis, few treatment choices, fear of the unknown, and problems getting treatment or being reimbursed for treatment; and WHEREAS, Multiple System Atrophy (MSA), also known as “Shy-Drager Syndrome”, is one example among many unique rare diseases, which affects 50,000 Americans yearly; it is a neuro-degenerative, terminal disorder that affects involuntary functions, including breathing, blood pressure, and muscle control. MSA affects twice as many men as women, starting at about age 60, and is commonly misdiagnosed; and WHEREAS, some rare diseases and disorders are more rare than others – such as Neuromyelitis Optica (NMO). This disease affects the optic nerves and spinal cord. Individuals develop pain and vision loss, which leads to weakness, numbness, sometimes paralysis of all four limbs. This syndrome damages nerve fibers and immune system cells; 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. There is limited national awareness, and as a result, limited research for CDH and many other rare diseases and disorders; and WHEREAS, Rare Disease and Disorder Day is a chance to raise awareness about rare diseases and disorders, which can lead to greater funding and research, as well as better treatment. It is also an opportunity to celebrate the work of the medical professionals and researchers who are dedicated to treatment of these rare conditions. NOW THEREFORE, I, Bill Walker, GOVERNOR OF THE STATE OF ALASKA, do hereby proclaim February 28, 2018 as: Rare Disease and Disorder Day in Alaska, and encourage Alaskans to recognize the impacts of rare diseases on their fellow Alaskans and their families, support research to find treatment and cures, and thank Alaska’s healthcare professionals who provide quality service to Alaskans.