[Congressional Bills 114th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 380 Introduced in Senate (IS)]

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114th CONGRESS
  2d Session
S. RES. 380

         Designating February 29, 2016 as ``Rare Disease Day''.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           February 29, 2016

 Mr. Brown (for himself, Mr. Barrasso, Mr. Wicker, Mr. Whitehouse, Ms. 
 Warren, Mr. Coons, and Mr. Hatch) submitted the following resolution; 
          which was referred to the Committee on the Judiciary

_______________________________________________________________________

                               RESOLUTION


 
         Designating February 29, 2016 as ``Rare Disease Day''.

Whereas a rare disease or disorder is one that affects a small number of 
        patients and, in the United States, typically fewer than 200,000 
        individuals annually are affected by a rare disease or disorder;
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 about \1/2\ of the 
        population affected by rare diseases in the United States;
Whereas many rare diseases are serious and life-threatening and lack an 
        effective treatment;
Whereas, as a result of the Orphan Drug Act (Public Law 97-414; 96 Stat. 2049), 
        there have been important advances made in the research of and treatment 
        for rare diseases;
Whereas the Food and Drug Administration (in this preamble referred to as the 
        ``FDA'') has made great strides in involving the patient in the drug 
        review process as part of the Patient-Focused Drug Development program, 
        an initiative that originated in the Food and Drug Administration Safety 
        and Innovation Act (Public Law 112-144; 126 Stat. 993);
Whereas, although approximately 500 drugs and biological products for the 
        treatment of rare diseases have been approved by the FDA, millions of 
        people in the United States have a rare disease for which there is no 
        such approved treatment;
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 people with rare diseases 
        and their families;
Whereas rare diseases and conditions include epidermolysis bullosa, progeria, 
        sickle cell anemia, spinal muscular atrophy, Duchenne muscular 
        dystrophy, Tay-Sachs disease, cystic fibrosis, pulmonary fibrosis, many 
        childhood cancers, fibrodysplasia ossificans progressiva, Smith-Magenis 
        syndrome, Batten disease, and hemophilia;
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 the 
        rare diseases;
Whereas the rare disease community made significant progress during the 113th 
        Congress, including the passage of the National Pediatric Research 
        Network Act of 2013 (Public Law 113-55; 127 Stat. 644), which calls 
        special attention to rare diseases and directs the National Institutes 
        of Health (in this preamble referred to as the ``NIH'') to facilitate 
        greater collaboration among researchers;
Whereas the rare disease community continued this progress through the first 
        session of the 114th Congress, including the passage of the Ensuring 
        Access to Clinical Trials Act of 2015 (Public Law 114-63; 129 Stat. 549) 
        and through increased funding for orphan products and rare disease 
        research;
Whereas both the FDA and the NIH have established special offices to advocate 
        for rare disease research and treatments;
Whereas the National Organization for Rare Disorders (in this preamble referred 
        to as ``NORD''), a nonprofit 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 2016 marks the 33rd anniversary of the enactment of the Orphan Drug Act 
        and the establishment of NORD;
Whereas NORD sponsors Rare Disease Day in the United States and partners with 
        many other major rare disease organizations 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 more than 80 countries in 2015; 
        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 29, 2016, 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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