[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 57 Agreed to Senate (ATS)]

113th CONGRESS
  1st Session
S. RES. 57

        Designating February 28, 2013, as ``Rare Disease Day''.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           February 26, 2013

 Mr. Brown (for himself, Mr. Barrasso, Mr. Whitehouse, Mr. Pryor, and 
 Mrs. Hagan) submitted the following resolution; which was considered 
                             and agreed to

_______________________________________________________________________

                               RESOLUTION


 
        Designating February 28, 2013, as ``Rare Disease Day''.

Whereas rare diseases and disorders are those that affect a small number of 
        patients, typically less than 200,000 people in the United States;
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 rare diseases and conditions include epidermolysis bullosa, progeria, 
        sickle cell anemia, Tay-Sachs, cystic fibrosis, many childhood cancers, 
        and fibrodysplasia ossificans progressiva;
Whereas people with rare diseases experience challenges that include difficulty 
        in obtaining an accurate diagnosis, limited treatment options, and 
        difficulty finding physicians or treatment centers with expertise in 
        their diseases;
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; 96 Stat. 2049) 
        and amendments made by that Act;
Whereas 2013 marks the 30th anniversary of the Orphan Drug Act and therefore a 
        time to reflect upon the successes of that Act and the challenges to be 
        addressed in the future;
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 occurring annually on the 
        last day of February and was observed in more than 60 countries in 2012;
Whereas Rare Disease Day was observed in the United States for the first time on 
        February 28, 2009; and
Whereas Rare Disease Day is anticipated 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, 2013, 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>