Knowledge

Rare disease

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466:, 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. 578:
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
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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. With only four diagnosed
435:(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. 393:
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).
603:, 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 643:, 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 461:
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
562:(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 132:
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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Kariampuzha, William; Alyea, Gioconda; Qu, Sue; Sanjak, Jaleal; Mathé, Ewy; Sid, Eric; Chatelaine, Haley; Yadaw, Arjun; Xu, Yanji; Zhu, Qian (2023).
1753: 1563: 77:. This was the first count since 1983, demonstrating that there were >10,500 rare diseases where prior estimates had been ~7,000 in the 85:
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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About 80% of rare diseases have a genetic component and only about 400 have therapies, according to Rare Genomics Institute.
566:(RDCRN). The RDCRN provides support for clinical studies and facilitating collaboration, study enrollment and data sharing. 501:
A rare disease is defined as one that affects fewer than 200,000 people across a broad range of possible disorders. Chronic
770:"The difference between rare and exceptionally rare: molecular characterization of ribose 5-phosphate isomerase deficiency" 596: 128:
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).
290: 225: 111: 78: 424:(number of new diagnoses in a given year), is used to describe the impact of rare diseases. The 1902: 486: 62: 1351:. National Center for Advancing Translational Sciences, US National Institutes of Health. 2019 825:"Confirmation of a Rare Genetic Leukoencephalopathy due to a Novel Bi-allelic Variant in RPIA" 114:, a federal law that was written to encourage research into rare diseases and possible cures. 1370:
Aymé S, Schmidtke J (December 2007). "Networking for rare diseases: a necessity for Europe".
716: 277: 1194:"Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database" 1542:"The Westminster All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions" 1513:
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
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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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that reconciles a wide variety of rare disease knowledge sources, such as
1798:"Rare Diseases Day: Experts call for more research for patients' welfare" 1775: 1292:"Precision information extraction for rare disease epidemiology at scale" 588: 1045:
Baldovino S, Moliner AM, Taruscio D, Daina E, Roccatello D (June 2016).
420:(number of people living with a disease at a given moment), rather than 54:
is considered the 2nd rarest known genetic disease being beaten only by
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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
66: 1887: 1823: 1079: 793: 640: 936: 1866: 1148:. European Organisation for Rare Diseases (EURORDIS). November 2005 675: 644: 506: 502: 74: 1877: 1406: 1372:
Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz
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on Public Health defines rare diseases as "life-threatening or
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affecting two known individuals, Catherine and Kirstie Fields.
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on Rare, Genetic and Undiagnosed Conditions produced a report
1047:"Rare Diseases in Europe: from a Wide to a Local Perspective" 1044: 636: 510: 1882: 1871: 1021:"Useful Information on Rare Diseases from an EU Perspective" 877: 534: 454: 1756:. National Organization for Rare Disorders. Archived from 1143:"Rare Diseases: Understanding This Public Health Priority" 1754:"Join Us In Observing Rare Disease Day On Feb. 28, 2009!" 1565:
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
1597:. Department of Health and Social Care. 9 January 2021 1432:"NORD – National Organization for Rare Disorders, Inc" 587:
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
1772:"Millions Around World to Observe Rare Disease Day" 1267:. Ecpc-online.org. 28 February 2009. Archived from 1038: 579:Service in England had not produced a plan and the 386:, "orphan diseases" have a distinct legal meaning. 1642:Nunn JS, Gwynne K, Gray S, Lacaze P (March 2021). 678:(Online portal for rare diseases and orphan drugs) 369: 574:In 2013, the United Kingdom government published 453:, a genetic disease: it is rare in most parts of 1894: 1556: 1001:. Rare diseases centre – Venetian Region – Italy 405:(EURORDIS) also includes both rare diseases and 666:National Organization for Rare Disorders (NORD) 1349:"Genetic and Rare Diseases Information Center" 1722:"February 29th Is The First Rare Disease Day" 1369: 1251:Rare Diseases, Diagnosis, Therapies, and Hope 1248: 409:into a larger category of "orphan diseases". 1363: 1479: 1265:"02/2009: Rare Cancers on Rare Disease Day" 999:"Rare diseases: what are we talking about?" 46:are medications targeting orphan diseases. 1467:Network, Rare Diseases Clinical Research. 489:religious communities in the US and among 155:Patient ratio standardised for comparison 1669: 1659: 1583: 1317: 1307: 1225: 964: 962: 912: 1872:National Organization for Rare Disorders 1764: 1623:. Department of Health & Social Care 1617:"England Rare Diseases Action Plan 2022" 1506: 1473:Rare Diseases Clinical Research Network 1343: 1341: 1339: 1337: 1135: 993: 991: 989: 987: 761: 745:. Siope.Eu. 9 June 2009. Archived from 564:Rare Diseases Clinical Research Network 433:European Organization for Rare Diseases 403:European Organization for Rare Diseases 52:ribose-5-phosphate isomerase deficiency 14: 1895: 1054:The Israel Medical Association Journal 959: 639:on the last day of February (thus, in 605:England Rare Diseases Action Plan 2022 65:released a rare disease subset of the 1714: 1097: 545:Public research and government policy 1746: 1534: 1334: 1249:Sanfilippo, Ana; Lin, Jimmy (2014). 984: 829:European Journal of Medical Genetics 597:Department of Health and Social Care 378:is frequently used as a synonym for 1648:Research Involvement and Engagement 1466: 1418:georgewbush-whitehouse.archives.gov 881:"How many rare diseases are there?" 619: 382:. But in the United States and the 24: 1730:. 28 February 2008. Archived from 1198:European Journal of Human Genetics 687:List of rare disease organisations 671:Undiagnosed Diseases Network (UDN) 533:. Rare diseases may be chronic or 496: 481:; these are known collectively as 25: 1914: 1845: 1488:The UK Strategy for Rare Diseases 1296:Journal of Translational Medicine 1013: 693:Orphanet Journal of Rare Diseases 576:The UK Strategy for Rare Diseases 569: 1591:"The UK Rare Diseases Framework" 1414:"President Signs Bills into Law" 1105:"The UK Rare Diseases Framework" 610: 560:Office of Rare Diseases Research 549: 1816: 1790: 1686: 1635: 1609: 1460: 1283: 1257: 1242: 1185: 1160: 1123: 1084:Knowledge Ecology International 1072: 370:Relationship to orphan diseases 1571:. NHS England. 29 January 2018 929: 885:Nature Reviews. Drug Discovery 871: 816: 735: 13: 1: 774:Journal of Molecular Medicine 728: 581:all-party parliamentary group 539:short-term medical conditions 412: 88: 1494:. Department of Health. 2013 682:ICD coding for rare diseases 136:The definitions used in the 7: 1883:Rare diseases search engine 1828:rarerevolutionmagazine.com/ 658: 529:causes, affecting any body 10: 1919: 1824:"Rare Revolution Magazine" 1661:10.1186/s40900-021-00256-3 1309:10.1186/s12967-023-04011-y 970:"Rare Disease Act of 2002" 897:10.1038/d41573-019-00180-y 841:10.1016/j.ejmg.2019.103708 601:UK Rare Diseases Framework 178:<200,000 in population 1863:Database of rare diseases 1857:Database of rare diseases 1454:OrphaNews – International 1384:10.1007/s00103-007-0381-9 1210:10.1038/s41431-019-0508-0 1168:"What is a rare disease?" 786:10.1007/s00109-010-0634-1 635:, the United States, and 334:<50,000 in population 152:Patient ratio as defined 103:Rare Diseases Act of 2002 1888:Rare Revolution Magazine 972:. United States Congress 653:Rare Revolution Magazine 541:are also rare diseases. 491:ethnically Jewish people 483:Finnish heritage disease 112:Orphan Drug Act of 1983 595:. In January 2021 the 50:patients in 27 years, 1544:. Genetic Alliance UK 1026:. European Commission 717:Health care rationing 1760:on 18 December 2008. 426:Global Genes Project 649:Genetic Alliance UK 447:infectious diseases 389:The United States' 145: 122:European Commission 1804:. 28 February 2021 1802:The Indian Express 1778:. 13 February 2009 1727:Medical News Today 1694:"Rare Disease Day" 749:on 3 December 2012 722:Ultra-rare disease 705:Idiopathic disease 696:(academic journal) 607:in February 2022. 407:neglected diseases 343:Russian Federation 143: 138:medical literature 63:Monarch Initiative 1522:. Rare Disease UK 711:Mystery Diagnosis 367: 366: 16:(Redirected from 1910: 1839: 1838: 1836: 1834: 1820: 1814: 1813: 1811: 1809: 1794: 1788: 1787: 1785: 1783: 1768: 1762: 1761: 1750: 1744: 1743: 1741: 1739: 1718: 1712: 1711: 1706: 1704: 1698:Genetic Alliance 1690: 1684: 1683: 1673: 1663: 1639: 1633: 1632: 1630: 1628: 1613: 1607: 1606: 1604: 1602: 1587: 1581: 1580: 1578: 1576: 1570: 1560: 1554: 1553: 1551: 1549: 1538: 1532: 1531: 1529: 1527: 1521: 1510: 1504: 1503: 1501: 1499: 1493: 1483: 1477: 1476: 1464: 1458: 1457: 1446: 1440: 1439: 1438:on 18 June 2008. 1434:. Archived from 1428: 1422: 1421: 1410: 1404: 1403: 1367: 1361: 1360: 1358: 1356: 1345: 1332: 1331: 1321: 1311: 1287: 1281: 1280: 1278: 1276: 1261: 1255: 1254: 1246: 1240: 1239: 1229: 1189: 1183: 1182: 1180: 1178: 1164: 1158: 1157: 1155: 1153: 1147: 1139: 1133: 1127: 1121: 1120: 1118: 1116: 1111:. 9 January 2021 1101: 1095: 1094: 1092: 1090: 1076: 1070: 1069: 1051: 1042: 1036: 1035: 1033: 1031: 1025: 1017: 1011: 1010: 1008: 1006: 995: 982: 981: 979: 977: 966: 957: 956: 954: 952: 933: 927: 926: 916: 875: 869: 868: 820: 814: 813: 765: 759: 758: 756: 754: 739: 700:Rare Disease Day 625:Rare Disease Day 620:Public awareness 537:, although many 449:. An example is 443:genetic diseases 146: 142: 56:Fields Condition 21: 1918: 1917: 1913: 1912: 1911: 1909: 1908: 1907: 1893: 1892: 1878:Rare Disease UK 1874:(United States) 1848: 1843: 1842: 1832: 1830: 1822: 1821: 1817: 1807: 1805: 1796: 1795: 1791: 1781: 1779: 1770: 1769: 1765: 1752: 1751: 1747: 1737: 1735: 1720: 1719: 1715: 1702: 1700: 1692: 1691: 1687: 1640: 1636: 1626: 1624: 1615: 1614: 1610: 1600: 1598: 1589: 1588: 1584: 1574: 1572: 1568: 1562: 1561: 1557: 1547: 1545: 1540: 1539: 1535: 1525: 1523: 1519: 1511: 1507: 1497: 1495: 1491: 1485: 1484: 1480: 1465: 1461: 1448: 1447: 1443: 1430: 1429: 1425: 1412: 1411: 1407: 1378:(12): 1477–83. 1368: 1364: 1354: 1352: 1347: 1346: 1335: 1288: 1284: 1274: 1272: 1271:on 26 July 2011 1263: 1262: 1258: 1247: 1243: 1190: 1186: 1176: 1174: 1166: 1165: 1161: 1151: 1149: 1145: 1141: 1140: 1136: 1130:Orphan Drug Act 1128: 1124: 1114: 1112: 1103: 1102: 1098: 1088: 1086: 1078: 1077: 1073: 1049: 1043: 1039: 1029: 1027: 1023: 1019: 1018: 1014: 1004: 1002: 997: 996: 985: 975: 973: 968: 967: 960: 950: 948: 947:. 15 April 2016 941:globalgenes.org 935: 934: 930: 876: 872: 821: 817: 766: 762: 752: 750: 743:"Rare Diseases" 741: 740: 736: 731: 726: 661: 622: 613: 572: 552: 547: 499: 497:Characteristics 451:cystic fibrosis 415: 396:orphan diseases 391:Orphan Drug Act 372: 91: 79:Orphan Drug Act 28: 23: 22: 18:Orphan diseases 15: 12: 11: 5: 1916: 1906: 1905: 1891: 1890: 1885: 1880: 1875: 1869: 1860: 1854: 1847: 1846:External links 1844: 1841: 1840: 1815: 1789: 1763: 1745: 1734:on 7 June 2020 1713: 1685: 1634: 1608: 1582: 1555: 1533: 1505: 1478: 1459: 1441: 1423: 1405: 1362: 1333: 1282: 1256: 1241: 1204:(2): 165–173. 1184: 1159: 1134: 1122: 1096: 1071: 1037: 1012: 983: 958: 928: 870: 815: 760: 733: 732: 730: 727: 725: 724: 719: 714: 707: 702: 697: 689: 684: 679: 673: 668: 662: 660: 657: 621: 618: 612: 609: 599:published the 571: 570:United Kingdom 568: 551: 548: 546: 543: 498: 495: 459:founder effect 414: 411: 384:European Union 376:orphan disease 371: 368: 365: 364: 361: 358: 352: 351: 348: 347:10 in 100,000 345: 339: 338: 335: 332: 326: 325: 322: 319: 317:United Kingdom 313: 312: 309: 306: 300: 299: 296: 293: 287: 286: 283: 280: 274: 273: 270: 267: 261: 260: 257: 254: 248: 247: 244: 241: 239:European Union 235: 234: 231: 228: 222: 221: 218: 215: 209: 208: 205: 202: 196: 195: 192: 189: 183: 182: 179: 176: 170: 169: 166: 165:65 in 100,000 163: 157: 156: 153: 150: 130:low prevalence 90: 87: 67:Mondo ontology 40:orphan disease 26: 9: 6: 4: 3: 2: 1915: 1904: 1903:Rare diseases 1901: 1900: 1898: 1889: 1886: 1884: 1881: 1879: 1876: 1873: 1870: 1868: 1864: 1861: 1858: 1855: 1853: 1850: 1849: 1829: 1825: 1819: 1803: 1799: 1793: 1777: 1773: 1767: 1759: 1755: 1749: 1733: 1729: 1728: 1723: 1717: 1710: 1699: 1695: 1689: 1681: 1677: 1672: 1667: 1662: 1657: 1653: 1649: 1645: 1638: 1622: 1618: 1612: 1596: 1592: 1586: 1567: 1566: 1559: 1543: 1537: 1518: 1517: 1509: 1490: 1489: 1482: 1474: 1470: 1463: 1455: 1451: 1445: 1437: 1433: 1427: 1419: 1415: 1409: 1401: 1397: 1393: 1389: 1385: 1381: 1377: 1373: 1366: 1350: 1344: 1342: 1340: 1338: 1329: 1325: 1320: 1315: 1310: 1305: 1301: 1297: 1293: 1286: 1270: 1266: 1260: 1252: 1245: 1237: 1233: 1228: 1223: 1219: 1215: 1211: 1207: 1203: 1199: 1195: 1188: 1173: 1169: 1163: 1144: 1138: 1131: 1126: 1110: 1106: 1100: 1085: 1081: 1075: 1067: 1063: 1060:(6): 359–63. 1059: 1055: 1048: 1041: 1022: 1016: 1000: 994: 992: 990: 988: 971: 965: 963: 946: 942: 938: 932: 924: 920: 915: 910: 906: 902: 898: 894: 890: 886: 882: 874: 866: 862: 858: 854: 850: 846: 842: 838: 835:(8): 103708. 834: 830: 826: 819: 811: 807: 803: 799: 795: 791: 787: 783: 779: 775: 771: 764: 748: 744: 738: 734: 723: 720: 718: 715: 713: 712: 708: 706: 703: 701: 698: 695: 694: 690: 688: 685: 683: 680: 677: 674: 672: 669: 667: 664: 663: 656: 654: 650: 646: 642: 638: 634: 630: 626: 617: 611:International 608: 606: 602: 598: 594: 590: 586: 582: 577: 567: 565: 561: 557: 550:United States 542: 540: 536: 532: 528: 527:proliferative 524: 520: 516: 512: 508: 504: 494: 492: 488: 484: 480: 475: 473: 467: 465: 460: 456: 452: 448: 444: 439: 436: 434: 429: 427: 423: 419: 410: 408: 404: 399: 397: 392: 387: 385: 381: 377: 363:1 in 100,000 362: 360:1 in 100,000 359: 357: 354: 353: 349: 346: 344: 341: 340: 336: 333: 331: 328: 327: 323: 320: 318: 315: 314: 310: 307: 305: 302: 301: 297: 294: 292: 289: 288: 284: 281: 279: 276: 275: 271: 268: 266: 263: 262: 258: 255: 253: 250: 249: 245: 242: 240: 237: 236: 232: 229: 227: 224: 223: 219: 216: 214: 211: 210: 206: 203: 201: 198: 197: 193: 190: 188: 185: 184: 180: 177: 175: 174:United States 172: 171: 167: 164: 162: 159: 158: 154: 151: 148: 147: 141: 139: 134: 131: 127: 123: 120:However, the 118: 115: 113: 108: 104: 100: 99:United States 95: 86: 84: 80: 76: 72: 68: 64: 59: 57: 53: 47: 45: 41: 37: 33: 19: 1833:27 September 1831:. 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Index

Orphan diseases
disease
Orphan drugs
ribose-5-phosphate isomerase deficiency
Fields Condition
Monarch Initiative
Mondo ontology
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

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