[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 91 Introduced in House (IH)]

113th CONGRESS
  1st Session
H. RES. 91

   Expressing support for designation of February 28, 2013, as Rare 
                              Disease Day.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           February 28, 2013

 Mr. Carson of Indiana (for himself, Mr. Burgess, Mr. Cartwright, Mr. 
  Cassidy, Mrs. Christensen, Mr. Conyers, Mr. Crowley, Mr. Holt, Mr. 
 Lance, Ms. Lee of California, Mr. Levin, Ms. Norton, Ms. Speier, and 
 Ms. Wasserman Schultz) submitted the following resolution; which was 
            referred to the Committee on Energy and Commerce

_______________________________________________________________________

                               RESOLUTION


 
   Expressing support for designation of February 28, 2013, as Rare 
                              Disease Day.

Whereas rare diseases and disorders are those which affect small patient 
        populations, typically populations smaller than 200,000 people in the 
        United States;
Whereas nearly 7,000 rare diseases affect 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 disease;
Whereas great strides have been made in research and treatment for rare diseases 
        as a result of the Orphan Drug Act;
Whereas 2013 marks the 30th anniversary of the Orphan Drug Act and therefore a 
        time to reflect upon its successes to date and 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 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;
Whereas February 28, 2013, would be an appropriate date to designate as Rare 
        Disease Day; and
Whereas Rare Disease Day is anticipated 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 House of Representatives--
            (1) supports the designation of 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>