congressional_record: CREC-2026-02-26-pt1-PgS711-2
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| granule_id | date | congress | session | volume | issue | title | chamber | granule_class | sub_granule_class | page_start | page_end | speakers | bills | citation | full_text |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| CREC-2026-02-26-pt1-PgS711-2 | 2026-02-26 | 119 | 2 | SENATE RESOLUTION 620--DESIGNATING FEBRUARY 28, 2026, AS "RARE DISEASE DAY" | SENATE | SENATE | DESIGNATING | S711 | S711 | [{"congress": "119", "type": "SRES", "number": "620"}, {"congress": "119", "type": "SRES", "number": "620"}, {"congress": "119", "type": "SRES", "number": "620"}] | 172 Cong. Rec. S711 | Congressional Record, Volume 172 Issue 38 (Thursday, February 26, 2026) [Congressional Record Volume 172, Number 38 (Thursday, February 26, 2026)] [Senate] [Page S711] From the Congressional Record Online through the Government Publishing Office [www.gpo.gov] SENATE RESOLUTION 620--DESIGNATING FEBRUARY 28, 2026, AS ``RARE DISEASE DAY'' Mr. BARRASSO (for himself and Mr. Blumenthal) submitted the following resolution; which was considered and agreed to: S. Res. 620 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 is defined as affecting 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 10,000 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 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, although there have been great advancements in finding treatments for rare diseases, approximately 95 percent of rare diseases still do not have a treatment approved by the FDA; Whereas 2026 marks the 43rd 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 the National Institutes of Health support innovative research on the 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 23 of the 46 novel drugs approved by the Center for Drug Evaluation and Research of the FDA in 2025-- (1) were approved to prevent, diagnose, or treat a rare disease or condition; and (2) received an orphan-drug designation; 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: Now, therefore, be it Resolved, That the Senate-- (1) designates February 28, 2026, 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. ____________________ |