Title: Expressing support for the designation of February 28, 2022, as "Rare Disease Day".
Policy area: Health

Summary:
This resolution expresses support for the designation of Rare Disease Day.

[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 952 Introduced in House (IH)]

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117th CONGRESS
  2d Session
H. RES. 952

Expressing support for the designation of February 28, 2022, as ``Rare 
                             Disease Day''.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           February 28, 2022

Mr. Carson (for himself, Mr. Hudson, Mrs. Beatty, Mr. Fitzpatrick, Mr. 
 Swalwell, Ms. Matsui, Ms. Sewell, Mr. Payne, Miss Gonzalez-Colon, Mr. 
  DeFazio, and Mr. Ruppersberger) submitted the following resolution; 
       which was referred to the Committee on Energy and Commerce

_______________________________________________________________________

                               RESOLUTION


 
Expressing support for the designation of February 28, 2022, as ``Rare 
                             Disease Day''.

Whereas a rare disease or disorder is a disease or disorder that affects a small 
        number of patients;
Whereas in the United States, a rare disease or disorder affects fewer than 
        200,000 individuals;
Whereas, as of the date of the adoption of this resolution, more than 7,000 rare 
        diseases or disorders affect approximately 1 in 10 individuals in the 
        United States;
Whereas children with rare diseases or disorders account for a significant 
        portion of the population affected by rare diseases or disorders in the 
        United States;
Whereas many rare diseases and disorders are serious and life-threatening and 
        lack effective treatments;
Whereas, as a result of the enactment of the Orphan Drug Act (Public Law 97-414; 
        96 Stat. 2049), important advances have been made in the research and 
        treatment of rare diseases and disorders;
Whereas the Food and Drug Administration (FDA) has made 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 the Food and Drug Administration has approved more than 1,000 
        orphan indications for drugs and biological products for the treatment 
        of rare diseases and disorders, 95 percent of rare diseases do not have 
        an FDA-approved treatment for their condition;
Whereas limited treatment options and difficulty obtaining reimbursement for 
        life-altering and lifesaving treatments can be challenging for 
        individuals with rare diseases or disorders and their families;
Whereas rare diseases and disorders include sickle cell anemia, spinal muscular 
        atrophy, amyotrophic lateral sclerosis, thyroid eye disease, myotonic 
        dystrophy, t-cell prolymphocytic leukemia, microtia, meatal atresia, and 
        conductive deafness;
Whereas individuals with rare diseases or disorders can experience difficulty in 
        obtaining accurate diagnoses and finding physicians or treatment centers 
        with expertise in their rare disease or disorder;
Whereas the 116th Congress passed a 4-year extension of the Rare Pediatric 
        Disease Priority Review Voucher program under section 529(b) of the 
        Federal Food, Drug, and Cosmetic Act (21 U.S.C. 360ff(b)) as part of the 
        Consolidated Appropriations Act, 2021 (Public Law 116-260; 134 Stat. 
        1182), providing an incentive for the development of therapies for 
        children with rare diseases;
Whereas the 116th Congress passed the Advancing Care for Exceptional Kids Act 
        (Public Law 116-16; 133 Stat. 852), improving access to coordinated, 
        patient-centered health care for children with complex and rare medical 
        conditions in Medicaid;
Whereas the Food and Drug Administration and the National Institutes of Health 
        support research on the treatment of rare diseases and disorders;
Whereas 2022 marks the 39th anniversary of the enactment of the Orphan Drug Act 
        (Public Law 97-414; 96 Stat. 2049);
Whereas Rare Disease Day is observed each year on the last day of February;
Whereas Rare Disease Day is a global event that was first observed in the United 
        States on February 28, 2009, and was observed in more than 100 countries 
        in 2021; and
Whereas Rare Disease Day is expected to be observed globally for years to come, 
        providing hope and information for rare disease and disorder patients 
        around the world: Now, therefore, be it
    Resolved, That the House of Representatives--
            (1) expresses support for the designation of ``Rare Disease 
        Day''; and
            (2) recognizes the importance of, with respect to rare 
        diseases and disorders--
                    (A) improving awareness;
                    (B) encouraging accurate and early diagnosis; and
                    (C) supporting national and global efforts to 
                develop effective treatments, diagnostics, and cures.
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