Title: A resolution designating February 28, 2017, as "Rare Disease Day".
Policy area: Health

Summary:
(This measure has not been amended since it was introduced. The summary of that version is repeated here.)
Designates February 28, 2017, as Rare Disease Day. Expresses support for a national and global commitment to developing new treatments, diagnostics, and cures for rare diseases and disorders.

[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 73 Agreed to Senate (ATS)]

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115th CONGRESS
  1st Session
S. RES. 73

        Designating February 28, 2017, as ``Rare Disease Day''.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           February 28, 2017

 Mr. Brown (for himself, Mr. Barrasso, Mr. Whitehouse, Ms. Warren, Mr. 
   Markey, Mr. Coons, Mr. Wicker, Mr. Van Hollen, Ms. Stabenow, Mrs. 
  Feinstein, Ms. Klobuchar, Mr. Hatch, and Mr. Booker) submitted the 
        following resolution; which was considered and agreed to

_______________________________________________________________________

                               RESOLUTION


 
        Designating February 28, 2017, as ``Rare Disease Day''.

Whereas a rare disease or disorder is one that affects a small number of 
        patients and, in the United States, typically fewer than 200,000 
        individuals annually are affected by a rare disease or disorder;
Whereas, as of February 2017, 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 approximately \1/2\ of 
        the population affected by rare diseases in the United States;
Whereas many rare diseases are serious and life-threatening and lack effective 
        treatments;
Whereas, as a result of Federal laws like the Orphan Drug Act (Public Law 97-
        414; 96 Stat. 2049), there have been important advances made in research 
        on, and treatment for, rare diseases;
Whereas the Food and Drug Administration has made great strides in gathering 
        patient perspectives to inform the drug review process as part of the 
        Patient-Focused Drug Development program, an initiative that originated 
        under the Food and Drug Administration Safety and Innovation Act (Public 
        Law 112-144; 126 Stat. 993);
Whereas, although nearly 600 drugs and biological products for the treatment of 
        rare diseases have been approved by the Food and Drug Administration, 
        millions of people in the United States have a rare disease for which 
        there is no approved treatment;
Whereas lack of access to effective treatments and difficulty in obtaining 
        reimbursement for life-altering, and even life-saving, treatments remain 
        significant challenges for people with rare diseases and their families;
Whereas rare diseases and conditions include Von Hippel-Lindau syndrome, fibrous 
        dysplasia, sickle cell anemia, spinal muscular atrophy, Duchenne 
        muscular dystrophy, dermatomyositis, cystic fibrosis, Friedreich's 
        ataxia, many childhood cancers, amyotrophic lateral sclerosis, 
        epidermolysis bullosa, frontotemporal dementia, and metachromatic 
        leukodystrophy;
Whereas people with rare diseases experience challenges that include--

    (1) difficulty in obtaining accurate diagnoses;

    (2) limited treatment options; and

    (3) difficulty finding physicians or treatment centers with expertise 
in the rare diseases;

Whereas the rare disease community gained important new tools during the 114th 
        Congress with the passage of the 21st Century Cures Act (Public Law 114-
        255), which--

    (1) streamlines the review by the Commissioner of Food and Drugs of 
genetically targeted therapies;

    (2) incentivizes the development of rare pediatric disease therapies;

    (3) strengthens pediatric medical research; and

    (4) adds billions of dollars of funding for the National Institutes of 
Health;

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 (referred to in this 
        preamble as ``NORD''), 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 2017 marks the 34th anniversary of the enactment of the Orphan Drug Act 
        (Public Law 97-414; 96 Stat. 2049) and the establishment of NORD;
Whereas NORD 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 is a global event, first observed in the United States 
        on February 28, 2009, and was observed in more than 85 countries in 
        2016; and
Whereas Rare Disease Day is expected 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, 2017, 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.
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