House Joint Resolution 25-1021
Page 1, Line 101Concerning the declaration of February 28, 2025, as Rare
Page 1, Line 102Disease Day.
Page 1, Line 1WHEREAS, Coloradans with rare diseases, and their families,
Page 1, Line 2friends, and caretakers, know the challenges they face every day, such as
Page 1, Line 3finding knowledgeable providers, obtaining appropriate treatments, and
Page 1, Line 4paying and traveling for care, and the many other ways in which life can be extra challenging because of a rare disease; and
Page 1, Line 5
Page 1, Line 6WHEREAS, One in ten people and more than 500,000 Coloradans live with a rare disease; and
Page 1, Line 7
Page 1, Line 8WHEREAS, According to the National Institutes of Health, there are more than 30 million Americans living with a rare disease today; and
Page 1, Line 9
Page 2, Line 1WHEREAS, An estimated 15 million children in the United States
Page 2, Line 2have a rare disease, and sadly, 30% will not live to see their fifth birthday; and
Page 2, Line 3
Page 2, Line 4WHEREAS, There are more than 10,000 rare diseases, defined as
Page 2, Line 5medical conditions affecting fewer than 200,000 Americans, and most of these conditions may affect only a few hundred individuals; and
Page 2, Line 6
Page 2, Line 7WHEREAS, These rare diseases are often lifelong, and many are terminal; and
Page 2, Line 8
Page 2, Line 9WHEREAS, Most rare diseases are genetic or have a genetic component; no individual or family is immune from a rare disease; and
Page 2, Line 10
Page 2, Line 11WHEREAS, Direct medical costs for people with rare diseases are
Page 2, Line 12three to five times higher than those for nonrare diseases; each year the costs amount to an estimated $400 billion; and
Page 2, Line 13
Page 2, Line 14WHEREAS, Fewer than 5% of the known 10,000 rare diseases have an FDA-approved treatment; and
Page 2, Line 15
Page 2, Line 16WHEREAS, In 1983, the National Organization for Rare
Page 2, Line 17Disorders pioneered the passage of the federal "Orphan Drug Act", the
Page 2, Line 18world's first law incentivizing drug development for rare diseases by offering market exclusivity and tax credits; and
Page 2, Line 19
Page 2, Line 20WHEREAS, The zebra is the official mascot for rare disease
Page 2, Line 21patients because, historically, medical professionals were taught that
Page 2, Line 22when they "hear hoofbeats" they should not expect to see a zebra but should look for the more common answer, a horse; and
Page 2, Line 23
Page 2, Line 24WHEREAS, Today, we know that one in ten Americans is like a
Page 2, Line 25"zebra", living with a rare condition; it is not always obvious to recognize
Page 2, Line 26or diagnose a person with a rare disease, and, as a result, this can cause
Page 2, Line 27a delay in care and often negatively impact a person's quality of life or life expectancy; and
Page 2, Line 28
Page 2, Line 29WHEREAS, This Rare Disease Day, special events and activities
Page 2, Line 30are planned for February 28th; individuals and families affected by rare
Page 2, Line 31diseases will be sharing their stories on social media, radio, and TV; in newspaper interviews; and at community events; and
Page 2, Line 32
Page 3, Line 1WHEREAS, We see our constituents with these conditions and
Page 3, Line 2acknowledge the need for better understanding, the need for access to care, and the financial impact on families; and
Page 3, Line 3
Page 3, Line 4WHEREAS, We also see that these families, despite the
Page 3, Line 5challenges, live their lives with optimism, hope for the future, courage,
Page 3, Line 6kindness for others, and, most of all, acceptance that this is, through no fault of their own, the life that they have been granted; now, therefore,
Page 3, Line 7
Page 3, Line 8Be It Resolved by the House of Representatives of the Seventy-fifth General Assembly of the State of Colorado, the Senate concurring herein:
Page 3, Line 9That we, the members of the Colorado General Assembly:
Page 3, Line 10
Page 3, Line 11(1) Declare February 28, 2025, Rare Disease Day in Colorado, to help raise awareness of rare diseases within Colorado;
Page 3, Line 12
Page 3, Line 13(2) "Show our stripes" in solidarity with our community of individual "zebras" living with a rare disease;
Page 3, Line 14
Page 3, Line 15(3) Recognize and support all of these individuals on this Rare Disease Day, in 2025 and every day;
Page 3, Line 16
Page 3, Line 17(4) Salute these individuals for all that it means to live with a rare disease and the humanity that they show in so doing; and
Page 3, Line 18
Page 3, Line 19(5) On this day, as we recognize Rare Disease Day around the
Page 3, Line 20country, take a moment to appreciate the more than 500,000 Coloradans,
Page 3, Line 21and the more than 30 million Americans, who live with a rare disease today.