A resolution designating February 29, 2024, as "Rare Disease Day".

Bill: 118-sres-636
Sponsor: full_name: Sen. Brown, Sherrod [D-OH]
Introduced: 2024-04-10
Policy area: Health
Subjects: Commemorative events and holidays

Health promotion and preventive care

Medical research

Medical tests and diagnostic methods
Latest action: action_date: 2024-04-10
text: Submitted in the Senate, considered, and agreed to without amendment and with a preamble by Unanimous Consent. (consideration: CR S2703; text: CR S2712)

Summaries:
action_date: 2024-04-10
action_desc: Passed Senate
text: <p>This resolution designates February 29, 2024, as Rare Disease Day.</p>

tv_txt: III 118th CONGRESS 2d Session S. RES. 636 IN THE SENATE OF THE UNITED STATES April 10, 2024 Mr. Brown (for himself, Mr. Barrasso , Mr. Wicker , Mr. Blumenthal , Mr. Casey , Mr. Booker , Mr. Whitehouse , Ms. Klobuchar , Mr. Scott of South Carolina , Mr. Marshall , Mr. Braun , and Mr. Scott of Florida ) submitted the following resolution; which was considered and agreed to RESOLUTION Designating 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 adoption of this resolution, more than 30,000,000 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 2024 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 programs such as the Accelerating Rare disease Cures Program of the Food and Drug Administration (referred to in this preamble as the FDA ) aim to drive scientific and regulatory innovation and engagement to accelerate the availability of treatments for patients with rare diseases; Whereas 28 of the 55 novel drugs approved by the Center for Drug Evaluation and Research of the FDA in 2023— (1) were approved to prevent, diagnose, or treat a rare disease or condition; and (2) received an orphan-drug designation; Whereas, although the FDA has approved more than 1,100 drugs and biological products for an orphan indication for the treatment of a rare disease or disorder, approximately 90 percent of rare diseases do not have a treatment approved by the FDA for their condition; Whereas financing life-altering and lifesaving treatments can be challenging for individuals with a rare disease or disorder and their families; 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 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; and 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 106 countries in 2023: Now, therefore, be it

That the Senate— (1) designates February 29, 2024, as 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 research efforts to develop effective treatments, diagnostics, and cures.