[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 368 Agreed to Senate (ATS)]

113th CONGRESS
  2d Session
S. RES. 368

        Designating February 28, 2014, as ``Rare Disease Day''.


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                   IN THE SENATE OF THE UNITED STATES

                           February 27, 2014

   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

_______________________________________________________________________

                               RESOLUTION


 
        Designating February 28, 2014, as ``Rare Disease Day''.

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.
                                 <all>