A resolution designating February 29, 2020, as "Rare Disease Day".

III 116TH CONGRESS 2D SESSION S. RES. 529 Designating February 29, 2020, as ‘‘Rare Disease Day’’. IN THE SENATE OF THE UNITED STATES MARCH 4, 2020 Mr. BROWN (for himself, Mr. BARRASSO, Mr. MARKEY, Ms. KLOBUCHAR, Mr. BOOKER, Mr. WHITEHOUSE, Mr. BLUMENTHAL, Mr. WICKER, and Mr. COONS) submitted the following resolution; which was considered and agreed to RESOLUTION Designating February 29, 2020, 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 typically 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 ap- proximately 30,000,000 individuals in the United States and their families; 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; VerDate Sep 11 2014 22:36 Mar 04, 2020 Jkt 099200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6300 E:\BILLS\SR529.ATS SR529 pamtmann on DSKBC07HB2PROD with BILLS 2 •SRES 529 ATS 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 ad- vances have been made in the research and treatment of rare diseases and disorders; Whereas the Food and Drug Administration has made strides in gathering patient perspectives to inform the drug re- view process as part of the Patient-Focused Drug Devel- opment 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 840 orphan indications for drugs and biological products for the treatment of rare diseases and disorders, millions of individuals in the United States have a rare disease or disorder for which there is no ap- proved treatment; 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 acrodermatitis enteropathica, medulloblastoma, Hartnup disease, mast cell activation syndrome, Usher syndrome, osteosarcoma, Kabuki syndrome, Fanconi anemia, Neurofibromatosis, NGLY1 deficiency, Chandler’s syndrome, tularemia, and Joubert syndrome; Whereas individuals with rare diseases or disorders can expe- rience difficulty in obtaining accurate diagnoses and find- VerDate Sep 11 2014 22:36 Mar 04, 2020 Jkt 099200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6300 E:\BILLS\SR529.ATS SR529 pamtmann on DSKBC07HB2PROD with BILLS 3 •SRES 529 ATS ing physicians or treatment centers with expertise in their rare disease or disorder; Whereas the 115th 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 chil- dren with rare diseases or disorders; Whereas the Food and Drug Administration and the National Institutes of Health support research on the treatment of rare diseases and disorders; Whereas 2020 marks the 37th 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, in 2020, Rare Disease Day falls on the rarest of days, February 29; 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 2019; and Whereas Rare Disease Day is expected to be observed glob- ally for years to come, providing hope and information for rare disease and disorder patients around the world: Now, therefore, be it Resolved, That the Senate— 1 (1) designates February 29, 2020, as ‘‘Rare 2 Disease Day’’; and 3 (2) recognizes the importance of, with respect 4 to rare diseases and disorders— 5 VerDate Sep 11 2014 22:36 Mar 04, 2020 Jkt 099200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\SR529.ATS SR529 pamtmann on DSKBC07HB2PROD with BILLS 4 •SRES 529 ATS (A) improving awareness; 1 (B) encouraging accurate and early diag- 2 nosis; and 3 (C) supporting national and global efforts 4 to develop effective treatments, diagnostics, and 5 cures. 6 Æ VerDate Sep 11 2014 22:36 Mar 04, 2020 Jkt 099200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6301 E:\BILLS\SR529.ATS SR529 pamtmann on DSKBC07HB2PROD with BILLS