Knowledge

Rare disease

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462:, have no apparent pattern of distribution but are simply rare. The classification of other conditions depends in part on the population being studied: All forms of cancer in children are generally considered rare, because so few children develop cancer, but the same cancer in adults may be more common. 574:
which "aims to ensure no one gets left behind just because they have a rare disease", with 51 recommendations for care and treatment across the UK to be implemented by 2020. Health services in the four constituent countries agreed to adopt implementation plans by 2014, but by October 2016, the Health
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Estimating the incidence and prevalence of rare diseases is a complex process due to their wide range of prevalence rates. Rare diseases with higher prevalences can be estimated through a screening panel or patient registries, while diseases which are exceedingly rare may only be able to be estimated
431:(EURORDIS) estimates that between 3.5 and 5.9% of the world's population is affected by one of approx. 6,000 distinct rare diseases identified to-date. European Union has suggested that between 6 and 8% of the European population could be affected by a rare disease sometime in their lives. 49:
Most rare diseases are genetic in origin and thus are present throughout the person's entire life, even if symptoms do not immediately appear. Many rare diseases appear early in life, and about 30% of children with rare diseases will die before reaching their fifth birthdays.
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includes both rare diseases and any non-rare diseases "for which there is no reasonable expectation that the cost of developing and making available in the United States a drug for such disease or condition will recovered from sales in the United States of such drug" as
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There is no single, widely accepted definition for rare diseases. Some definitions rely solely on the number of people living with a disease, and other definitions include other factors, such as the existence of adequate treatments or the severity of the disease.
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Haendel, Melissa; Vasilevsky, Nicole; Unni, Deepak; Bologa, Cristian; Harris, Nomi; Rehm, Heidi; Hamosh, Ada; Baynam, Gareth; Groza, Tudor; McMurry, Julie; Dawkins, Hugh; Rath, Ana; Thaxon, Courtney; Bocci, Giovanni; Joachimiak, Marcin P. (February 2020).
599:, a policy paper which included a commitment that the four nations would develop action plans, working with the rare disease community, and that "where possible, each nation will aim to publish the action plans in 2021". NHS England published 639:, on February 29, the rarest day) to raise awareness for rare diseases. There are a number of non-profit and charitable organisations which push for further awareness, interest, and engagement in the subject of rare diseases, including 457:
can result in a disease that is very rare worldwide being prevalent within the smaller community. Many infectious diseases are prevalent in a given geographic area but rare everywhere else. Other diseases, such as many rare forms of
558:(ORDR) was established by H.R. 4013/Public Law 107–280 in 2002. H.R. 4014, signed the same day, refers to the "Rare Diseases Orphan Product Development Act". Similar initiatives have been proposed in Europe. The ORDR also runs the 128:
is later defined as generally meaning fewer than 1 in 2,000 people. Diseases that are statistically rare, but not also life-threatening, chronically debilitating, or inadequately treated, are excluded from their definition.
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through a multi-step nationwide reporting process or case reports. Therefore, the data is often incomplete and complex to amalgamate, compare, and update continually. The Genetic and Rare Diseases Information Center at the
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strictly according to prevalence, specifically "any disease or condition that affects fewer than 200,000 people in the United States", or about 1 in 1,500 people. This definition is essentially the same as that of the
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Organisations around the world are exploring ways of involving people affected by rare diseases in helping shape future research, including using online methods to explore the perspectives of multiple stakeholders.
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While no single number has been agreed upon for which a disease is considered rare, several efforts have been undertaken to estimate the number of unique rare diseases. In 2019, the
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Nguengang Wakap, Stéphanie; Lambert, Deborah M.; Olry, Annie; Rodwell, Charlotte; Gueydan, Charlotte; Lanneau, Valérie; Murphy, Daniel; Le Cam, Yann; Rath, Ana (2020).
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curates and compiles rare disease prevalence and incidence from PubMed articles and abstracts using a combination of deep learning algorithms and rare disease experts.
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describes a rare disease whose rarity results in little or no funding or research for treatments, without financial incentives from governments or other agencies.
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Rare diseases can vary in prevalence between populations, so a disease that is rare in some populations may be common in others. This is especially true of
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is considered the rarest known genetic disease, affecting two known individuals, Catherine and Kirstie Fields. With four diagnosed patients in 27 years,
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Kariampuzha, William; Alyea, Gioconda; Qu, Sue; Sanjak, Jaleal; Mathé, Ewy; Sid, Eric; Chatelaine, Haley; Yadaw, Arjun; Xu, Yanji; Zhu, Qian (2023).
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has also estimated that currently approximately 10,000 rare diseases exist globally, with 80% of these having identified genetic origins.
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In Japan, the legal definition of a rare disease is one that affects fewer than 50,000 patients in Japan, or about 1 in 2,500 people.
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Because of definitions that include reference to treatment availability, a lack of resources, and severity of the disease, the term
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released a rare disease subset of the Mondo ontology that reconciles a wide variety of rare disease knowledge sources, such as
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About 80% of rare diseases have a genetic component and only about 400 have therapies, according to Rare Genomics Institute.
562:(RDCRN). The RDCRN provides support for clinical studies and facilitating collaboration, study enrollment and data sharing. 497:
A rare disease is defined as one that affects fewer than 200,000 people across a broad range of possible disorders. Chronic
766:"The difference between rare and exceptionally rare: molecular characterization of ribose 5-phosphate isomerase deficiency" 592: 124:
debilitating diseases which are of such low prevalence that special combined efforts are needed to address them". The term
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Kaur, Parneet; Wamelink, Mirjam M. C.; van der Knaap, Marjo S.; Girisha, Katta Mohan; Shukla, Anju (1 August 2019).
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and by national health plans are similarly divided, with definitions ranging from 1/1,000 to 1/200,000.
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diseases are commonly classified as rare. Among numerous possibilities, rare diseases may result from
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Leaving No One Behind: Why England needs an implementation plan for the UK Strategy for Rare Diseases
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Leaving No One Behind: Why England needs an implementation plan for the UK Strategy for Rare Diseases
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but relatively common in Europe and in populations of European descent. In smaller communities, the
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Wamelink MM, GrĂĽning NM, Jansen EE, Bluemlein K, Lehrach H, Jakobs C, Ralser M (September 2010).
286: 221: 107: 74: 420:(number of new diagnoses in a given year), is used to describe the impact of rare diseases. The 1898: 482: 62: 1347:. National Center for Advancing Translational Sciences, US National Institutes of Health. 2019 821:"Confirmation of a Rare Genetic Leukoencephalopathy due to a Novel Bi-allelic Variant in RPIA" 110:, a federal law that was written to encourage research into rare diseases and possible cures. 1366:
Aymé S, Schmidtke J (December 2007). "Networking for rare diseases: a necessity for Europe".
712: 273: 1190:"Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database" 1538:"The Westminster All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions" 1509:
All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions (February 2017).
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that affects a small percentage of the population. In some parts of the world, the term
1722: 1666: 1639: 1391: 1314: 1287: 1222: 1189: 909: 876: 856: 801: 717: 700: 522: 442: 351: 133: 121: 1727: 1671: 1383: 1319: 1227: 1209: 1076:"KEI Briefing Note 2020:4 Selected Government Definitions of Orphan or Rare Diseases" 1057: 914: 896: 860: 848: 840: 793: 706: 1431: 1395: 805: 1661: 1651: 1375: 1309: 1299: 1217: 1201: 904: 888: 832: 785: 777: 695: 620: 534: 1640:"Involving people affected by a rare condition in shaping future genomic research" 526: 446: 438: 386: 587:
would develop an implementation plan. In January 2018 NHS England published its
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estimates some 300 million people worldwide are affected by a rare disease.
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Baldovino S, Moliner AM, Taruscio D, Daina E, Roccatello D (June 2016).
416:(number of people living with a disease at a given moment), rather than 1855:
at GARD, The United States Genetic and Rare Diseases Information Center
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Definitions of rare disease in different countries: an incomplete list
1883: 1819: 1075: 789: 636: 932: 1862: 1144:. European Organisation for Rare Diseases (EURORDIS). November 2005 671: 640: 502: 498: 70: 1873: 1402: 1368:
Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz
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on Public Health defines rare diseases as "life-threatening or
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on Rare, Genetic and Undiagnosed Conditions produced a report
1043:"Rare Diseases in Europe: from a Wide to a Local Perspective" 1040: 632: 506: 1878: 1867: 1017:"Useful Information on Rare Diseases from an EU Perspective" 873: 530: 450: 1752:. National Organization for Rare Disorders. Archived from 1139:"Rare Diseases: Understanding This Public Health Priority" 1750:"Join Us In Observing Rare Disease Day On Feb. 28, 2009!" 1561:
Implementation Plan for the UK Strategy for Rare Diseases
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Implementation Plan for the UK Strategy for Rare Diseases
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chosen because 29 February is the rarest day of the year
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About 40 rare diseases have a far higher prevalence in
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in February 2017. In March 2017 it was announced that
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Disease affecting a small percentage of the population
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National Center for Advancing Translational Sciences
1768:"Millions Around World to Observe Rare Disease Day" 1263:. Ecpc-online.org. 28 February 2009. Archived from 1034: 575:Service in England had not produced a plan and the 382:, "orphan diseases" have a distinct legal meaning. 1638:Nunn JS, Gwynne K, Gray S, Lacaze P (March 2021). 674:(Online portal for rare diseases and orphan drugs) 365: 570:In 2013, the United Kingdom government published 449:, a genetic disease: it is rare in most parts of 1890: 1552: 997:. Rare diseases centre – Venetian Region – Italy 401:(EURORDIS) also includes both rare diseases and 662:National Organization for Rare Disorders (NORD) 1345:"Genetic and Rare Diseases Information Center" 1718:"February 29th Is The First Rare Disease Day" 1365: 1247:Rare Diseases, Diagnosis, Therapies, and Hope 1244: 405:into a larger category of "orphan diseases". 1359: 1475: 1261:"02/2009: Rare Cancers on Rare Disease Day" 995:"Rare diseases: what are we talking about?" 46:are medications targeting orphan diseases. 1463:Network, Rare Diseases Clinical Research. 485:religious communities in the US and among 151:Patient ratio standardised for comparison 1665: 1655: 1579: 1313: 1303: 1221: 960: 958: 908: 1868:National Organization for Rare Disorders 1760: 1619:. Department of Health & Social Care 1613:"England Rare Diseases Action Plan 2022" 1502: 1469:Rare Diseases Clinical Research Network 1339: 1337: 1335: 1333: 1131: 989: 987: 985: 983: 757: 741:. Siope.Eu. 9 June 2009. Archived from 560:Rare Diseases Clinical Research Network 429:European Organization for Rare Diseases 399:European Organization for Rare Diseases 56:ribose-5-phosphate isomerase deficiency 14: 1891: 1050:The Israel Medical Association Journal 955: 635:on the last day of February (thus, in 601:England Rare Diseases Action Plan 2022 1710: 1093: 541:Public research and government policy 1742: 1530: 1330: 1245:Sanfilippo, Ana; Lin, Jimmy (2014). 980: 825:European Journal of Medical Genetics 593:Department of Health and Social Care 374:is frequently used as a synonym for 1644:Research Involvement and Engagement 1462: 1414:georgewbush-whitehouse.archives.gov 877:"How many rare diseases are there?" 615: 378:. But in the United States and the 24: 1726:. 28 February 2008. Archived from 1194:European Journal of Human Genetics 683:List of rare disease organisations 667:Undiagnosed Diseases Network (UDN) 529:. Rare diseases may be chronic or 492: 477:; these are known collectively as 25: 1910: 1841: 1484:The UK Strategy for Rare Diseases 1292:Journal of Translational Medicine 1009: 689:Orphanet Journal of Rare Diseases 572:The UK Strategy for Rare Diseases 565: 58:is considered the second rarest. 1587:"The UK Rare Diseases Framework" 1410:"President Signs Bills into Law" 1101:"The UK Rare Diseases Framework" 606: 556:Office of Rare Diseases Research 545: 1812: 1786: 1682: 1631: 1605: 1456: 1279: 1253: 1238: 1181: 1156: 1119: 1080:Knowledge Ecology International 1068: 366:Relationship to orphan diseases 1567:. NHS England. 29 January 2018 925: 881:Nature Reviews. Drug Discovery 867: 812: 731: 13: 1: 770:Journal of Molecular Medicine 724: 577:all-party parliamentary group 535:short-term medical conditions 408: 84: 1490:. Department of Health. 2013 678:ICD coding for rare diseases 132:The definitions used in the 7: 1879:Rare diseases search engine 1824:rarerevolutionmagazine.com/ 654: 525:causes, affecting any body 10: 1915: 1820:"Rare Revolution Magazine" 1657:10.1186/s40900-021-00256-3 1305:10.1186/s12967-023-04011-y 966:"Rare Disease Act of 2002" 893:10.1038/d41573-019-00180-y 837:10.1016/j.ejmg.2019.103708 597:UK Rare Diseases Framework 174:<200,000 in population 1859:Database of rare diseases 1853:Database of rare diseases 1450:OrphaNews – International 1380:10.1007/s00103-007-0381-9 1206:10.1038/s41431-019-0508-0 1164:"What is a rare disease?" 782:10.1007/s00109-010-0634-1 631:, the United States, and 330:<50,000 in population 148:Patient ratio as defined 99:Rare Diseases Act of 2002 1884:Rare Revolution Magazine 968:. United States Congress 649:Rare Revolution Magazine 537:are also rare diseases. 487:ethnically Jewish people 479:Finnish heritage disease 108:Orphan Drug Act of 1983 591:. In January 2021 the 1540:. Genetic Alliance UK 1022:. European Commission 713:Health care rationing 1756:on 18 December 2008. 422:Global Genes Project 645:Genetic Alliance UK 443:infectious diseases 385:The United States' 141: 118:European Commission 1800:. 28 February 2021 1798:The Indian Express 1774:. 13 February 2009 1723:Medical News Today 1690:"Rare Disease Day" 745:on 3 December 2012 718:Ultra-rare disease 701:Idiopathic disease 692:(academic journal) 603:in February 2022. 403:neglected diseases 339:Russian Federation 139: 134:medical literature 63:Monarch Initiative 1518:. Rare Disease UK 707:Mystery Diagnosis 363: 362: 16:(Redirected from 1906: 1835: 1834: 1832: 1830: 1816: 1810: 1809: 1807: 1805: 1790: 1784: 1783: 1781: 1779: 1764: 1758: 1757: 1746: 1740: 1739: 1737: 1735: 1714: 1708: 1707: 1702: 1700: 1694:Genetic Alliance 1686: 1680: 1679: 1669: 1659: 1635: 1629: 1628: 1626: 1624: 1609: 1603: 1602: 1600: 1598: 1583: 1577: 1576: 1574: 1572: 1566: 1556: 1550: 1549: 1547: 1545: 1534: 1528: 1527: 1525: 1523: 1517: 1506: 1500: 1499: 1497: 1495: 1489: 1479: 1473: 1472: 1460: 1454: 1453: 1442: 1436: 1435: 1434:on 18 June 2008. 1430:. Archived from 1424: 1418: 1417: 1406: 1400: 1399: 1363: 1357: 1356: 1354: 1352: 1341: 1328: 1327: 1317: 1307: 1283: 1277: 1276: 1274: 1272: 1257: 1251: 1250: 1242: 1236: 1235: 1225: 1185: 1179: 1178: 1176: 1174: 1160: 1154: 1153: 1151: 1149: 1143: 1135: 1129: 1123: 1117: 1116: 1114: 1112: 1107:. 9 January 2021 1097: 1091: 1090: 1088: 1086: 1072: 1066: 1065: 1047: 1038: 1032: 1031: 1029: 1027: 1021: 1013: 1007: 1006: 1004: 1002: 991: 978: 977: 975: 973: 962: 953: 952: 950: 948: 929: 923: 922: 912: 871: 865: 864: 816: 810: 809: 761: 755: 754: 752: 750: 735: 696:Rare Disease Day 621:Rare Disease Day 616:Public awareness 533:, although many 445:. An example is 439:genetic diseases 142: 138: 52:Fields condition 21: 1914: 1913: 1909: 1908: 1907: 1905: 1904: 1903: 1889: 1888: 1874:Rare Disease UK 1870:(United States) 1844: 1839: 1838: 1828: 1826: 1818: 1817: 1813: 1803: 1801: 1792: 1791: 1787: 1777: 1775: 1766: 1765: 1761: 1748: 1747: 1743: 1733: 1731: 1716: 1715: 1711: 1698: 1696: 1688: 1687: 1683: 1636: 1632: 1622: 1620: 1611: 1610: 1606: 1596: 1594: 1585: 1584: 1580: 1570: 1568: 1564: 1558: 1557: 1553: 1543: 1541: 1536: 1535: 1531: 1521: 1519: 1515: 1507: 1503: 1493: 1491: 1487: 1481: 1480: 1476: 1461: 1457: 1444: 1443: 1439: 1426: 1425: 1421: 1408: 1407: 1403: 1374:(12): 1477–83. 1364: 1360: 1350: 1348: 1343: 1342: 1331: 1284: 1280: 1270: 1268: 1267:on 26 July 2011 1259: 1258: 1254: 1243: 1239: 1186: 1182: 1172: 1170: 1162: 1161: 1157: 1147: 1145: 1141: 1137: 1136: 1132: 1126:Orphan Drug Act 1124: 1120: 1110: 1108: 1099: 1098: 1094: 1084: 1082: 1074: 1073: 1069: 1045: 1039: 1035: 1025: 1023: 1019: 1015: 1014: 1010: 1000: 998: 993: 992: 981: 971: 969: 964: 963: 956: 946: 944: 943:. 15 April 2016 937:globalgenes.org 931: 930: 926: 872: 868: 817: 813: 762: 758: 748: 746: 739:"Rare Diseases" 737: 736: 732: 727: 722: 657: 618: 609: 568: 548: 543: 495: 493:Characteristics 447:cystic fibrosis 411: 392:orphan diseases 387:Orphan Drug Act 368: 87: 75:Orphan Drug Act 28: 23: 22: 15: 12: 11: 5: 1912: 1902: 1901: 1887: 1886: 1881: 1876: 1871: 1865: 1856: 1850: 1843: 1842:External links 1840: 1837: 1836: 1811: 1785: 1759: 1741: 1730:on 7 June 2020 1709: 1681: 1630: 1604: 1578: 1551: 1529: 1501: 1474: 1455: 1437: 1419: 1401: 1358: 1329: 1278: 1252: 1237: 1200:(2): 165–173. 1180: 1155: 1130: 1118: 1092: 1067: 1033: 1008: 979: 954: 924: 866: 811: 756: 729: 728: 726: 723: 721: 720: 715: 710: 703: 698: 693: 685: 680: 675: 669: 664: 658: 656: 653: 617: 614: 608: 605: 595:published the 567: 566:United Kingdom 564: 547: 544: 542: 539: 494: 491: 455:founder effect 410: 407: 380:European Union 372:orphan disease 367: 364: 361: 360: 357: 354: 348: 347: 344: 343:10 in 100,000 341: 335: 334: 331: 328: 322: 321: 318: 315: 313:United Kingdom 309: 308: 305: 302: 296: 295: 292: 289: 283: 282: 279: 276: 270: 269: 266: 263: 257: 256: 253: 250: 244: 243: 240: 237: 235:European Union 231: 230: 227: 224: 218: 217: 214: 211: 205: 204: 201: 198: 192: 191: 188: 185: 179: 178: 175: 172: 166: 165: 162: 161:65 in 100,000 159: 153: 152: 149: 146: 126:low prevalence 86: 83: 40:orphan disease 26: 18:Orphan disease 9: 6: 4: 3: 2: 1911: 1900: 1899:Rare diseases 1897: 1896: 1894: 1885: 1882: 1880: 1877: 1875: 1872: 1869: 1866: 1864: 1860: 1857: 1854: 1851: 1849: 1846: 1845: 1825: 1821: 1815: 1799: 1795: 1789: 1773: 1769: 1763: 1755: 1751: 1745: 1729: 1725: 1724: 1719: 1713: 1706: 1695: 1691: 1685: 1677: 1673: 1668: 1663: 1658: 1653: 1649: 1645: 1641: 1634: 1618: 1614: 1608: 1592: 1588: 1582: 1563: 1562: 1555: 1539: 1533: 1514: 1513: 1505: 1486: 1485: 1478: 1470: 1466: 1459: 1451: 1447: 1441: 1433: 1429: 1423: 1415: 1411: 1405: 1397: 1393: 1389: 1385: 1381: 1377: 1373: 1369: 1362: 1346: 1340: 1338: 1336: 1334: 1325: 1321: 1316: 1311: 1306: 1301: 1297: 1293: 1289: 1282: 1266: 1262: 1256: 1248: 1241: 1233: 1229: 1224: 1219: 1215: 1211: 1207: 1203: 1199: 1195: 1191: 1184: 1169: 1165: 1159: 1140: 1134: 1127: 1122: 1106: 1102: 1096: 1081: 1077: 1071: 1063: 1059: 1056:(6): 359–63. 1055: 1051: 1044: 1037: 1018: 1012: 996: 990: 988: 986: 984: 967: 961: 959: 942: 938: 934: 928: 920: 916: 911: 906: 902: 898: 894: 890: 886: 882: 878: 870: 862: 858: 854: 850: 846: 842: 838: 834: 831:(8): 103708. 830: 826: 822: 815: 807: 803: 799: 795: 791: 787: 783: 779: 775: 771: 767: 760: 744: 740: 734: 730: 719: 716: 714: 711: 709: 708: 704: 702: 699: 697: 694: 691: 690: 686: 684: 681: 679: 676: 673: 670: 668: 665: 663: 660: 659: 652: 650: 646: 642: 638: 634: 630: 626: 622: 613: 607:International 604: 602: 598: 594: 590: 586: 582: 578: 573: 563: 561: 557: 553: 546:United States 538: 536: 532: 528: 524: 523:proliferative 520: 516: 512: 508: 504: 500: 490: 488: 484: 480: 476: 471: 469: 463: 461: 456: 452: 448: 444: 440: 435: 432: 430: 425: 423: 419: 415: 406: 404: 400: 395: 393: 388: 383: 381: 377: 373: 359:1 in 100,000 358: 356:1 in 100,000 355: 353: 350: 349: 345: 342: 340: 337: 336: 332: 329: 327: 324: 323: 319: 316: 314: 311: 310: 306: 303: 301: 298: 297: 293: 290: 288: 285: 284: 280: 277: 275: 272: 271: 267: 264: 262: 259: 258: 254: 251: 249: 246: 245: 241: 238: 236: 233: 232: 228: 225: 223: 220: 219: 215: 212: 210: 207: 206: 202: 199: 197: 194: 193: 189: 186: 184: 181: 180: 176: 173: 171: 170:United States 168: 167: 163: 160: 158: 155: 154: 150: 147: 144: 143: 137: 135: 130: 127: 123: 119: 114: 111: 109: 104: 100: 96: 95:United States 91: 82: 80: 76: 72: 68: 64: 59: 57: 53: 47: 45: 41: 37: 33: 19: 1829:27 September 1827:. 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Index

Orphan disease
disease
Orphan drugs
Fields condition
ribose-5-phosphate isomerase deficiency
Monarch Initiative
OMIM
Orphanet
Orphan Drug Act
Global Genes
United States
Rare Diseases Act of 2002
Orphan Drug Act of 1983
European Commission
chronically
medical literature
Brazil
United States
Argentina
Australia
Chile
Colombia
European Union
Mexico
Norway
Panama
Singapore
Switzerland
United Kingdom
Japan

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