F L O R I D A H O U S E O F R E P R E S E N T A T I V E S
HR 8039 2024
1 House Resolution
2 A resolution recognizing February 29, 2024, as "Rare
3 Disease Day" in Florida.
4
5 WHEREAS, the National Institutes of Health reports that
6 there are nearly 7,000 diseases and conditions that affect fewer
7 than 200,000 Americans, meaning that they are considered rare,
8 and
9 WHEREAS, while each of these diseases may affect small
10 numbers of people, rare diseases as a group affect nearly 30
11 million Americans, 50 percent of whom are children, and
12 WHEREAS, many rare diseases are serious and debilitating
13 conditions that have a significant impact on the lives of those
14 affected, and
15 WHEREAS, while the Food and Drug Administration has
16 approved drugs and biologics for more than 1,000 rare disease
17 indications, millions of Americans have rare diseases for which
18 there is no approved treatment, and
19 WHEREAS, individuals and families affected by rare diseases
20 often experience problems, such as diagnosis delay, difficulty
21 finding a medical expert, and lack of access to treatments or
22 ancillary services, and
23 WHEREAS, while the public is familiar with some rare
24 diseases, such as muscular dystrophy and amyotrophic lateral
25 sclerosis, better known as Lou Gehrig's disease, and is
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HR 8039 2024
26 sympathetic to those affected, many patients and families
27 affected by lesser-known rare diseases bear a large share of the
28 burden of funding research and raising public awareness to
29 support the search for treatments, and
30 WHEREAS, thousands of Floridians are among those affected
31 by rare diseases, since nearly 1 in 10 Americans has a rare
32 disease, and were given a voice in 2021 with the establishment
33 in this state of the Rare Disease Advisory Council, and
34 WHEREAS, the Orphan Drug Act, championed in Congress by
35 Florida Representative Gus Bilirakis, has encouraged and
36 promoted the discovery and development of biopharmaceuticals
37 designed to treat and potentially cure rare diseases, and
38 WHEREAS, many of the world's leading academic institutions,
39 academic medical centers, biotech companies, and pharmaceutical
40 companies that are conducting research and seeking cures for
41 rare diseases are doing so in this state, NOW, THEREFORE,
42
43 Be It Resolved by the House of Representatives of the State of
44 Florida:
45
46 That February 29, 2024, is recognized as "Rare Disease Day"
47 in Florida.
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