Title: A resolution designating February 28, 2019, as "Rare Disease Day".
Policy area: Health

Summary:
This resolution (1) designates February 28, 2019, as Rare Disease Day; (2) recognizes the importance of improving awareness and encouraging accurate and early diagnosis of rare diseases and disorders; and (3) expresses support for a national and global commitment to developing new treatments, diagnostics, and cures for rare diseases and disorders.

[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 90 Agreed to Senate (ATS)]

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116th CONGRESS
  1st Session
S. RES. 90

        Designating February 28, 2019, as ``Rare Disease Day''.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           February 28, 2019

 Mr. Brown (for himself, Mr. Barrasso, Mr. Whitehouse, Mr. Markey, Mr. 
   Blumenthal, Mr. Coons, Ms. Stabenow, Mr. Booker, and Ms. Warren) 
 submitted the following resolution; which was considered and agreed to

_______________________________________________________________________

                               RESOLUTION


 
        Designating February 28, 2019, as ``Rare Disease Day''.

Whereas a rare disease or disorder is one that affects a small number of 
        patients, which, in the United States, is considered to be a population 
        of fewer than 200,000 individuals;
Whereas, as of the date of the adoption of this resolution, more than 7,000 rare 
        diseases affect as many as 30,000,000 people in the United States and 
        their families;
Whereas children with rare diseases account for a significant portion 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 the Orphan Drug Act (Public Law 97-414; 96 Stat. 2049), 
        there have been important advances made in the research of, 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 was 
        reaffirmed under the FDA Reauthorization Act of 2017 (Public Law 115-52; 
        131 Stat. 1005);
Whereas, although more than 750 orphan indications for drugs and biological 
        products have been approved by the Food and Drug Administration for the 
        treatment of rare diseases, 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 McArdle disease, Ehlers-Danlos 
        syndrome, acoustic neuroma, Paget disease, Landau-Kleffner syndrome, 
        necrotizing fasciitis, mucopolysaccharidosis type I, Rasmussen 
        encephalitis, Sanfilippo syndrome, Prader-Willi syndrome, Wagner 
        syndrome, Barth syndrome, and many rare cancers;
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 disease affecting the individual;

Whereas the 115\th\ Congress passed a 10-year extension of the Children's Health 
        Insurance Program under title XXI of the Social Security Act (42 U.S.C. 
        1397aa et seq.), ensuring health insurance 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 (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 2019 marks the 36\th\ 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 that--

    (1) was first observed in the United States on February 28, 2009; and

    (2) was observed in more than 90 countries in 2018; 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, 2019, 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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