February 29, 2024: Rare Disease Day

WHEREAS, there are approximately 7,000 diseases and conditions considered rare, each affecting fewer than 200,000 Americans in the United States according to the National Institutes of Health; and,

WHEREAS, while each of these diseases may affect small numbers of people, rare diseases as a group affect almost 30 million Americans and thousands of Michigan residents; and,

WHEREAS, many rare diseases are chronic, progressive, and debilitating, significantly impacting the lives of those affected; and,

WHEREAS, while more than 800 drugs and biologics have been approved by the Food and Drug Administration for the treatment of rare diseases, millions of Americans have rare diseases for which no treatments are available; and,

WHEREAS, individuals and families affected by rare diseases often experience challenges such as diagnostic delay, difficulty finding medical experts, and lack of access to treatments or ancillary services; and,

WHEREAS, the rare disease community is often underrepresented in funding, research, clinical trials, and advocacy efforts, with much of the burden to raise public awareness and support placed on those affected; and, 

WHEREAS, people in our state are doing important work by contributing to organizations to help individuals and families living with rare diseases, such as the KAT6 Foundation, a non-profit organization dedicated to raising awareness and supporting families living with the rare genetic KAT6 syndrome; and,

WHEREAS, the National Organization for Rare Disorders is organizing a nationwide observance of Rare Disease Day on February 29, 2024; and, 

WHEREAS, thousands of patients, caregivers, medical professionals, researchers, pharmaceutical companies, and others in the state of Michigan will participate in this observance;

NOW, THEREFORE, I, Gretchen Whitmer, governor of Michigan, do hereby proclaim February 29, 2024, as Rare Disease Day in Michigan.