THE BILL ITSELF
HR 8033
Rare Disease Day
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House Resolution
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A resolution designating February 28, 2026, as "Rare
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Disease Day" in Florida.
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WHEREAS, the National Institutes of Health reports that
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there are nearly 7,000 diseases and conditions that affect fewer
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than 200,000 Americans, meaning that they are considered rare,
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and
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WHEREAS, while each of these diseases may affect small
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numbers of people, rare diseases as a group affect nearly 30
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million Americans, 50 percent of whom are children, and
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WHEREAS, many rare diseases are serious and debilitating
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conditions that have a significant impact on the lives of those
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affected, and
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WHEREAS, while the Food and Drug Administration has
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approved drugs and biologics for more than 1,000 rare disease
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indications, millions of Americans have rare diseases for which
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there is no approved treatment, and
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WHEREAS, individuals and families affected by rare diseases
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often experience problems, such as diagnosis delay, difficulty
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finding a medical expert, and lack of access to treatments or
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ancillary services, and
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WHEREAS, thousands of Floridians are among those affected
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by rare diseases, since nearly 1 in 10 Americans have a rare
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disease, and these Floridians were given a voice in 2021 with
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the establishment in this state of the Rare Disease Advisory
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Council, and
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WHEREAS, the Orphan Drug Act, championed in Congress by
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Florida Representative Gus Bilirakis, has encouraged and
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promoted the discovery and development of biopharmaceuticals
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designed to treat and potentially cure rare diseases, NOW,
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THEREFORE,
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Be It Resolved by the House of Representatives of the State of
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Florida:
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That February 28, 2026, is designated as "Rare Disease Day"
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in Florida.