On February 28, 2026, Alaska Governor Mike Dunleavy proclaimed the date as Rare Disease and Disorder Day in the state. The proclamation highlighted that rare diseases are defined as physical conditions affecting fewer than 200,000 people, with over 10,000 such diseases impacting about 30 million Americans.
The majority of rare diseases are believed to be genetic, caused by changes in genes or chromosomes. However, the exact causes for many remain unknown, making research and treatment challenging. Individuals and families living with rare diseases often face isolation, difficulties obtaining timely diagnoses, limited treatment options, and challenges with reimbursement for medical care.
Governor Dunleavy noted that although rare diseases may be less common and less recognized among the general public, their impact can be just as severe as more prevalent illnesses. He cited Amyotrophic Lateral Sclerosis (ALS) and Celiac Disease as examples of serious conditions affecting individuals and families—ALS being a progressive neurodegenerative disease leading to muscle weakness and loss of function, while Celiac Disease is an autoimmune disorder triggered by gluten ingestion resulting in damage to the small intestine.
The proclamation acknowledged that diagnosing one of approximately 7,000 designated rare conditions can be extremely difficult due to limited research and available treatments. Rare Disease and Disorder Day aims to raise awareness about these issues among Alaskans and encourage support for affected individuals.
“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.”
Governor Dunleavy urged all residents “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.”
According to the official website of the Office of the Governor of Alaska (https://gov.alaska.gov/), community events such as this are recognized through annual gatherings and proclamations honoring various groups including veterans, first responders, cultural traditions—and now those affected by rare diseases. The governor’s office also provides services like aid with state agency issues and handles proclamation requests from residents. Governor Dunleavy has served as Alaska’s 12th governor since his election in 2018 and reelection in 2022 (https://gov.alaska.gov/).
