[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 157 Introduced in House (IH)]

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115th CONGRESS
  1st Session
H. RES. 157

Expressing support for the designation of the last day of February each 
                     year, as ``Rare Disease Day''.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           February 28, 2017

   Mr. Carson of Indiana (for himself, Mr. McCaul, Ms. Bordallo, Mr. 
 Crowley, Mr. Deutch, Mr. Lance, Mr. MacArthur, Mr. Marino, Ms. Moore, 
 Ms. Norton, and Mr. Peters) submitted the following resolution; which 
          was referred to the Committee on Energy and Commerce

_______________________________________________________________________

                               RESOLUTION


 
Expressing support for the designation of the last day of February each 
                     year, as ``Rare Disease Day''.

Whereas rare diseases and disorders are those which affect small patient 
        populations, typically populations smaller than 200,000 individuals in 
        the United States;
Whereas nearly 7,000 rare diseases affect nearly 30,000,000 people in the United 
        States and their families;
Whereas over half of all rare diseases affect children;
Whereas many rare diseases are serious, life-threatening, and lack an effective 
        treatment;
Whereas rare diseases and conditions cross the medical spectrum and include a 
        broad range of diseases such as epidermolysis bullosa, progeria, sickle 
        cell anemia, Tay-Sachs, Leigh's disease, WAGR syndrome, cystic fibrosis, 
        most childhood cancers, fibrodysplasia ossificans progressiva, 
        Friedreich's ataxia, and tuberous sclerosis;
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 more than 450 drugs and biologics have been approved for the treatment 
        of rare diseases according to the Food and Drug Administration, millions 
        of people in the United States have rare diseases for which there is no 
        approved treatment;
Whereas challenges to reimbursement for life-altering and often life-saving 
        treatments still exist, such as in reimbursement for medical foods that 
        treat rare metabolic disorders;
Whereas great strides have been made in research and treatment for rare diseases 
        as a result of the Orphan Drug Act and amendments made by that Act;
Whereas the Food and Drug Administration has taken 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;
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'' is a global event occurring 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 anticipated to continue 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.
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