house resolution no.44

Reps. Morgan, Alexander, Arbit, Bierlein, Fitzgerald, Glanville, Morse, Weiss, Wilson and Young offered the following resolution:

A resolution to declare February 28, 2023, as Rare Disease Day in the state of Michigan.

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 (NIH); 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 (FDA) 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, The National Organization for Rare Disorders (NORD) is organizing a nationwide observance of Rare Disease Day on February 28, 2023; and

Whereas, Thousands of patients, caregivers, medical professionals, researchers, pharmaceutical companies, and others in Michigan will participate in this observance; now, therefore, be it

Resolved by the House of Representatives, That the members of this legislative body declare February 28, 2023, as Rare Disease Day in the state of Michigan.