[Congressional Bills 112th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 383 Agreed to Senate (ATS)]

112th CONGRESS
  2d Session
S. RES. 383

        Designating February 29, 2012, as ``Rare Disease Day''.


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                   IN THE SENATE OF THE UNITED STATES

                           February 29, 2012

    Mr. Brown of Ohio (for himself and Mr. Barrasso) submitted the 
        following resolution; which was considered and agreed to

_______________________________________________________________________

                               RESOLUTION


 
        Designating February 29, 2012, as ``Rare Disease Day''.

Whereas rare diseases and disorders are those diseases and disorders that affect 
        a small patient population, which in the United States is typically a 
        population of fewer than 200,000 people;
Whereas, as of the date of approval of this resolution, nearly 7,000 rare 
        diseases affect 30,000,000 people and their families in the United 
        States;
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 life-threatening and lack an effective treatment;
Whereas rare diseases and disorders include epidermolysis bullosa, progeria, 
        sickle cell anemia, Tay-Sachs disease, cystic fibrosis, many childhood 
        cancers, and fibrodysplasia ossificans progressiva;
Whereas people with a rare disease experience challenges that include difficulty 
        in obtaining an accurate diagnosis, limited treatment options, and 
        difficulty finding a physician or treatment center with expertise in the 
        disease;
Whereas great strides have been made in research and treatment for rare diseases 
        as a result of the Orphan Drug Act (21 U.S.C. 360aa et seq.);
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, was a primary force behind the enactment of 
        the Orphan Drug Act and remains a critical public voice for people with 
        rare diseases;
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 has become a global event that occurs annually on the 
        last day of February;
Whereas Rare Disease Day was observed in the United States for the first time on 
        February 28, 2009; and
Whereas Rare Disease Day is expected to be observed globally in 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, 2012, 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 the commitment of the United States and all 
        countries to improving access to, and developing, new 
        treatments, diagnostics, and cures for rare diseases and 
        disorders.
                                 <all>