[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 161 Introduced in House (IH)]

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116th CONGRESS
  1st Session
H. RES. 161

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


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           February 28, 2019

  Mr. Carson of Indiana 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 more than 7,000 rare diseases affect approximately 30,000,000 people in 
        the United States and their families;
Whereas children with rare diseases account for a significant proportion of the 
        population affected by rare diseases;
Whereas many rare diseases are serious, life-threatening, and lack an effective 
        treatment;
Whereas rare diseases and conditions cross the medical spectrum;
Whereas individuals 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 although over 750 drugs and biologics have been approved for the 
        treatment of rare diseases by the Food and Drug Administration, millions 
        of people in the United States have rare diseases for which there is no 
        approved treatment;
Whereas lack of effective treatments and difficulty in obtaining reimbursement 
        for life-altering and often life-saving treatments remain significant 
        challenges for individuals with rare diseases and their families;
Whereas as a result of the Orphan Drug Act, there have been important advances 
        in research of and treatment for rare diseases;
Whereas the Food and Drug Administration has taken great strides in gathering 
        patient perspectives to inform the drug review process as part of its 
        Patient-Focused Drug Development program, an initiative that was 
        reaffirmed under the Food and Drug Administration Reauthorization Act of 
        2017;
Whereas the 115th Congress passed a 10-year extension of the Children's Health 
        Insurance Program, ensuring coverage for many children with rare 
        diseases;
Whereas both the Food and Drug Administration and the National Institutes of 
        Health have established special offices to support and facilitate rare 
        disease research and treatments;
Whereas the National Organization for Rare Disorders, 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 the National Organization for Rare Disorders 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'' was observed in the United States for the first 
        time on February 28, 2009, and observed in more than 90 countries in 
        2018; 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 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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