[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 1036 Introduced in House (IH)]

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118th CONGRESS
  2d Session
H. RES. 1036

Expressing support for the designation of February 29, 2024, as ``Rare 
                             Disease Day''.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           February 29, 2024

  Mr. Carson (for himself, Mr. Bacon, Ms. Barragan, Mrs. Beatty, Ms. 
  Caraveo, Mr. Davis of North Carolina, Mr. Fitzpatrick, Mr. Gallego, 
 Mrs. Gonzalez-Colon, Mr. Hudson, Ms. Jackson Lee, Ms. Kamlager-Dove, 
   Mr. Kean of New Jersey, Ms. Lee of California, Mr. McGovern, Mr. 
    Mullin, Ms. Norton, Ms. Porter, Ms. Sewell, Ms. Stansbury, Mr. 
Swalwell, Ms. Tlaib, Ms. Tokuda, and Mr. Trone) submitted the following 
 resolution; which was referred to the Committee on Energy and Commerce

_______________________________________________________________________

                               RESOLUTION


 
Expressing support for the designation of February 29, 2024, 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 25,000,000 
        individuals in the United States are living with at least 1 of the more 
        than 7,000 known rare diseases or disorders;
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;
Whereas this year marks the 41st anniversary of the enactment of the Orphan Drug 
        Act (Public Law 97-414; 96 Stat. 2049), a landmark law enabling 
        tremendous advances in the research and treatment of rare diseases and 
        disorders;
Whereas, in 2022, the Center for Drug Evaluation and Research, in the Food and 
        Drug Administration (referred to in this preamble as ``FDA''), 
        established the Accelerating Rare disease Cures Program with a vision of 
        speeding and increasing the development of effective and safe treatment 
        options to address the unmet needs of patients with rare diseases;
Whereas the 117th Congress passed into law as part of the Consolidated 
        Appropriations Act, 2023 (Public Law 117-328; 136 Stat. 4459), 
        provisions creating the rare disease endpoint advancement pilot program 
        in the FDA to support the development of novel efficacy endpoints to 
        help facilitate the development and timely approval of rare disease 
        treatments;
Whereas, although the FDA has approved more than 1,100 orphan indications for 
        drugs and biological products for the treatment of rare diseases and 
        disorders, more than 90 percent of rare diseases do not have a treatment 
        approved by the FDA for their condition;
Whereas limited treatment options and financing 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, Sanfilippo syndrome, 
        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 the Medicaid Services Investment and 
        Accountability Act of 2019 (Public Law 116-16; 133 Stat. 852), which 
        included provisions for improving access to coordinated, patient-
        centered health care for children with complex and rare medical 
        conditions in Medicaid, and became effective October 1, 2022;
Whereas the FDA and the National Institutes of Health support innovative 
        research on the treatment of rare diseases and disorders;
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 2022; 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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