Florida Senate - 2022                            (NP)    SR 1116
       
       
        
       By Senator Baxley
       
       
       
       
       
       12-01106-22                                           20221116__
    1                          Senate Resolution                        
    2         A resolution recognizing February 28, 2022, 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
   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 Senate of the State of Florida:
   44  
   45         That February 28, 2022, is recognized as “Rare Disease Day”
   46  in Florida.