[Congressional Record (Bound Edition), Volume 160 (2014), Part 3]
[Senate]
[Pages 3501-3502]
[From the U.S. Government Publishing Office, www.gpo.gov]




SENATE RESOLUTION 368--DESIGNATING FEBRUARY 28, 2014, AS ``RARE DISEASE 
                                 DAY''

  Mr. BROWN (for himself, Mr. Barrasso, Mr. Wicker, Mr. Coons, Mr. 
Bennet, Mr. Whitehouse, Mrs. Feinstein, Mr. Pryor, and Ms. Warren) 
submitted the following resolution; which was considered and agreed to:

                              S. Res. 368

       Whereas a rare disease or disorder is one that affects a 
     small number of patients - in the United States, typically 
     less than 200,000 individuals annually;
       Whereas as of the date of approval of this resolution, 
     nearly 7,000 rare diseases affect approximately 30,000,000 
     people in the United States and their families;
       Whereas children with rare genetic diseases account for 
     more than half of the population affected by rare diseases in 
     the United States;
       Whereas many rare diseases are serious, life-threatening, 
     and lack an effective treatment;
       Whereas great strides have been made in research and 
     treatment for rare diseases as a result of the Orphan Drug 
     Act (Public Law 97-414);
       Whereas the Food and Drug Administration has made great 
     strides in involving the patient in the drug review process 
     as part of its Patient-Focused Drug Development program, an 
     initiative that originated in the Food and Drug 
     Administration Safety and Innovation Act (Public Law 112-
     144);
       Whereas a third of all treatments approved by the Food and 
     Drug Administration in 2013 were orphan products intended to 
     treat rare diseases;
       Whereas lack of access to effective treatments and 
     difficulty in obtaining reimbursement for life-altering, and 
     even life-saving, treatments still exist and remain 
     significant challenges for the rare disease community and 
     their families;
       Whereas rare diseases and conditions include epidermolysis 
     bullosa, progeria, sickle cell anemia, spinal muscular 
     atrophy (SMA), Duchenne muscular dystrophy (DMD), Tay-Sachs, 
     cystic fibrosis, pulmonary fibrosis, many childhood cancers, 
     and fibrodysplasia ossificans progressiva;
       Whereas people with rare diseases experience challenges 
     that include difficulty in obtaining accurate diagnoses, 
     limited treatment options, and difficulty finding physicians 
     or treatment centers with expertise in their diseases;
       Whereas the rare disease community made great strides in 
     2013, including the passage of the National Pediatric 
     Research Network Act (Public Law 113-55), which calls special 
     attention to rare diseases and directs the National 
     Institutes of Health to facilitate greater collaboration 
     among researchers;
       Whereas both the Food and Drug Administration and the 
     National Institutes of Health have established special 
     offices to advocate for rare disease research and treatments;
       Whereas the National Organization for Rare Disorders, an 
     organization established in 1983 to provide services to and 
     advocate on behalf of patients with rare diseases, remains a 
     critical public voice for people with rare diseases;
       Whereas 2013 marked the 30th anniversary of the Orphan Drug 
     Act and the National Organization for Rare Disorders;
       Whereas the National Organization for Rare Disorders 
     sponsors Rare Disease Day in the United States to increase 
     public awareness of rare diseases;
       Whereas Rare Disease Day is observed each year on the last 
     day of February;
       Whereas Rare Disease Day is a global event, first observed 
     in the United States on February 28, 2009, and observed in 60 
     countries in 2013; and
       Whereas Rare Disease Day is expected to be observed 
     globally for years to come, providing hope and information 
     for rare disease patients around the world: Now, therefore, 
     be it
       Resolved, That the Senate--
       (1) designates February 28, 2014, as ``Rare Disease Day'';
       (2) recognizes the importance of improving awareness and 
     encouraging accurate and early diagnosis of rare diseases and 
     disorders; and
       (3) supports a national and global commitment to improving 
     access to, and developing new treatments, diagnostics, and 
     cures for rare diseases and disorders.

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