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European Union · EMA · Rare diseases

EU orphan designations

Every medicine the European Commission has designated as an orphan medicine for a rare disease, on the EMA's recommendation, with its current status.

Source: European Medicines Agency, orphan designations data (reproduced with acknowledgement of the source). Synced 27 Sep 2026
3,310Orphan designations listed
2,205Currently active
125Designated in the last 12 months
1,069Withdrawn or expired
Maintained by Sreepriya Prasannan
MSc Digital Transformation of Life Sciences (Innopharma Education / Griffith College); MSc & BSc Botany HSE Spark Ignite 2026 โ€” Top 14 finalist
Compiled from EMA orphan designation records ยท Last verified ยท Editorial standards
01

All orphan designations, newest first

3,310 designations · page 20 of 34
SubstanceIntended useStatusDesignated
2-hydroxymethyl-2-methoxymethyl-1-azabicyclo[2,2,2]octan-3-one
EU/3/14/1386
Treatment of ovarian cancer Active (positive) 16 Dec 2014
Heat-killed Mycobacterium obuense (whole cell)
EU/3/14/1385
Treatment of pancreatic cancer Active (positive) 16 Dec 2014
EU/3/14/1384
Treatment of WHIM syndrome Active (positive) 16 Dec 2014
single-chain urokinase plasminogen activator
EU/3/14/1383
Treatment of pleural empyema Active (positive) 16 Dec 2014
allogeneic CD34+ cells expanded ex vivo with an aryl hydrocarbon receptor antagonistย (spanlecortemlocel)
EU/3/14/1382
Treatment of acute lymphoblastic leukaemia Withdrawn 16 Dec 2014
sodium ascorbate;menadione sodium bisulfite
-
Treatment of autosomal dominant polycystic kidney disease Negative 11 Dec 2014
adeno-associated viral vector serotype 8 containing the human MD1 gene
EU/3/14/1381
Treatment of Duchenne muscular dystrophy Active (positive) 19 Nov 2014
ataluren
EU/3/14/1380
Treatment of mucopolysaccharidosis type I Withdrawn 19 Nov 2014
Dantrolene sodium
EU/3/14/1379
Treatment of malignant hyperthermia Active (positive) 19 Nov 2014
Diaspirin cross-linked haemoglobin
EU/3/14/1378
Treatment of hepatocellular carcinoma Active (positive) 19 Nov 2014
chloroquine
EU/3/14/1377
2 clinical trials →
Treatment of glioma Active (positive) 19 Nov 2014
arimoclomol citrate
EU/3/14/1376 · now authorised as Miplyffa; Meplyffa
Treatment of Niemann-Pick's disease, type C Active (positive) 19 Nov 2014
Pro-Pro-Thr-Val-Pro-Thr-Arg
EU/3/14/1375
Treatment of xeroderma pigmentosum Withdrawn 19 Nov 2014
(3S)-1-azabicyclo[2.2.2]oct-3-yl{2-[2-(4-fluorophenyl)-1,3-thiazol-4-yl]propan-2-yl}carbaNmate (venglustat)
EU/3/14/1374
Treatment of Gaucher disease Active (positive) 19 Nov 2014
EU/3/14/1373 · now authorised as Vynpenta (previously AvacopanChemoCentryx); Tavneos
Treatment of granulomatosis with polyangiitis Active (positive) 19 Nov 2014
(2R,3S)-2-(4-cyclopentylaminophenyl)-1-(2-fluoro-6-methylbenzoyl)piperidine-3-carboxylic acid(4-methyl-3-trifluoromethylphenyl)amNide
EU/3/14/1372 · now authorised as Vynpenta (previously AvacopanChemoCentryx); Tavneos
Treatment of microscopic polyangiitis (avacopan) Active (positive) 19 Nov 2014
Humanised IgG1 monoclonal antibody against human eotaxin-2
EU/3/14/1371
Treatment of systemic sclerosis Active (positive) 19 Nov 2014
siponimod
EU/3/14/1370
3 clinical trials →
Treatment of polymyositis Withdrawn 19 Nov 2014
siponimod
EU/3/14/1369
3 clinical trials →
Treatment of dermatomyositis Withdrawn 19 Nov 2014
palovarotene
EU/3/14/1368 · now authorised as Sohonos
Treatment of fibrodysplasia ossificans progressiva Withdrawn 19 Nov 2014
bazedoxifene acetate
EU/3/14/1367
Treatment of hereditary haemorrhagic telangiectasia Active (positive) 19 Nov 2014
recombinant human pentraxin-2
EU/3/14/1366
Treatment of primary myelofibrosis Active (positive) 19 Nov 2014
recombinant human pentraxin-2
EU/3/14/1365
Treatment of post-polycythaemia vera myelofibrosis Active (positive) 19 Nov 2014
olaptesed pegol
EU/3/14/1364
Treatment of glioma Active (positive) 19 Nov 2014
4-[[(1S,4S)-5-[[4-[4-(oxazol-2-yl)phenoxy]phenyl]methyl]-2,5-diazabicyclo[2.2.1]hept-2-yl]methyl]benzoic acid (acebilustat)
EU/3/14/1363
Treatment of cystic fibrosis Active (positive) 19 Nov 2014
1-(6-benzothiazolylsulfonyl)-5-chloro-1H-indole-2-butanoic acid (lanifibranor)
EU/3/14/1362
Treatment of idiopathic pulmonary fibrosis Active (positive) 19 Nov 2014
1-(6-benzothiazolylsulfonyl)-5-chloro-1H-indole-2-butanoic acid (lanifibranor)
EU/3/14/1361
Treatment of systemic sclerosis Withdrawn 19 Nov 2014
A combination of H-Lys-Lys-Gly-Pro-Arg-Cys(SH)-Leu-Thr-Arg-Tyr-Tyr-Ser-Ser-Phe-Val-Asn-Met-Glu-Gly-Lys-Lys-OH and H-Lys-Lys-Gly-Asp-Asn-Ile-Met-Val-Thr-Phe-Argโ€ฆ
EU/3/14/1360
Treatment of haemophilia A Withdrawn 19 Nov 2014
pentosan polysulfate sodium
EU/3/14/1359
3 clinical trials →
Treatment of mucopolysaccharidosis type I Active (positive) 19 Nov 2014
recombinant human pentraxin-2
EU/3/14/1358
Treatment of post-essential thrombocythaemia myelofibrosis Active (positive) 19 Nov 2014
imatinib
EU/3/14/1357
32 clinical trials →
Treatment of acute respiratory distress syndrome (ARDS) Active (positive) 19 Nov 2014
Donor T lymphocytes depleted ex-vivo of host alloreactive T cells using photodynamic treatment
EU/3/14/1356 · now authorised as Luxceptar
Treatment of acute myeloid leukaemia Withdrawn 19 Nov 2014
selinexor
EU/3/14/1355
47 clinical trials →
Treatment of plasma cell myeloma Active (positive) 19 Nov 2014
selinexor
EU/3/14/1354
47 clinical trials →
Treatment of chronic lymphocytic leukaemia / small lymphocytic lymphoma Active (positive) 19 Nov 2014
Mexiletine hydrochloride
EU/3/14/1353 · now authorised as Namuscla
5 clinical trials →
Treatment of myotonic disorders Active (positive) 19 Nov 2014
S3,S13-cyclo(D-tyrolsyl-L-isoleucyl-L-cysteinyl-L-valyl-1-methyl-L-tryptophyl-L-glutaminyl-L-aspartyl-L-tryptophyl-N-methyl-L-glycyl-L-alanyl-L-histidyl-L-argiโ€ฆ
EU/3/14/1327
Treatment of paroxysmal nocturnal haemoglobinuria Active (positive) 22 Oct 2014
raxibacumab
EU/3/14/1352
Treatment of inhalation anthrax disease Active (positive) 15 Oct 2014
recombinant human monoclonal IgG1 antibody for fibroblast growth factor 23 (burosumab)
EU/3/14/1351 · now authorised as Crysvita
Treatment of X-linked hypophosphataemia Active (positive) 15 Oct 2014
recombinant human monoclonal antibody of the IgG1 kappa class against human macrophage colony-stimulating factor (lacnotuzumab)
EU/3/14/1350
Treatment of tenosynovial giant cell tumour, localised and diffuse type Withdrawn 15 Oct 2014
recombinant human insulin receptor monoclonal antibody-fused-ฮฑ-L-iduronidase
EU/3/14/1349
Treatment of mucopolysaccharidosis type I Withdrawn 15 Oct 2014
recombinant human bone morphogenetic protein 4
EU/3/14/1348
Treatment of glioma Active (positive) 15 Oct 2014
pyridoxal 5'-phosphate
EU/3/14/1347
Treatment of pyridoxamine 5'-phosphate oxidase deficiency Active (positive) 15 Oct 2014
oxalobacter formigenes strain HC-1
EU/3/14/1346
Treatment of short bowel syndrome Active (positive) 15 Oct 2014
osilodrostat
EU/3/14/1345 · now authorised as Isturisa
2 clinical trials →
Treatment of Cushing's syndrome Active (positive) 15 Oct 2014
nitric oxide
EU/3/14/1344
4 clinical trials →
Treatment of cystic fibrosis Active (positive) 15 Oct 2014
Immunoglobulin G1, anti-(human tumour-associated calcium signal transducer 2)(human-Mus musculus monoclonal hRS7 heavy chain), disulfide with human-Mus musculuโ€ฆ
EU/3/14/1343
Treatment of pancreatic cancer Withdrawn 15 Oct 2014
cysteamine hydrochloride
EU/3/14/1341 · now authorised as Dropcys
Treatment of cystinosis Active (positive) 15 Oct 2014
cultured allogeneic corneal limbal stem cells
EU/3/14/1340
Treatment of limbal stem cell deficiency Active (positive) 15 Oct 2014
cannabidiol
EU/3/14/1339 · now authorised as Epidyolex
16 clinical trials →
Treatment of Dravet syndrome Active (positive) 15 Oct 2014
adeno-associated viral vector serotype 8 containing the human UGT1A1 gene (volrubigene ralaparvovec)
EU/3/14/1338
Treatment of Crigler-Najjar syndrome Active (positive) 15 Oct 2014
acamprosate calcium
EU/3/14/1337
Treatment of fragile X syndrome Active (positive) 15 Oct 2014
(S)-6-hydroxy-2,5,7,8-tetramethyl-N-((R)-piperidin-3-yl)chroman-2-carboxamide hydrochloride
EU/3/14/1336
Treatment of Leigh syndrome Withdrawn 15 Oct 2014
(S)-2-(1-((6-amino-5-cyanopyrimidin-4-yl)amino)ethyl)-4-oxo-3-phenyl-3,4-dihydropyrrolo[2,1-f][1,2,4]triazine-5-carbonitrile (tanziertib)
EU/3/14/1335
Treatment of pemphigus Withdrawn 15 Oct 2014
EU/3/14/1334
Treatment of fragile X syndrome Active (positive) 15 Oct 2014
Lumacaftor;ivacaftor
EU/3/14/1333
3 clinical trials →
Treatment of cystic fibrosis Withdrawn 22 Aug 2014
Macromolecular conjugate of heparin sodium on a polymer backbone
EU/3/14/1332
Prevention of ischaemia/reperfusion injury associated with solid organ transplantation Active (positive) 22 Aug 2014
recombinant fusion protein consisting of a modified form of the extracellular domain of human activin receptor IIB linked to the human IgG1 Fc domainย (luspaterโ€ฆ
EU/3/14/1331 · now authorised as Reblozyl
Treatment of myelodysplastic syndromes Active (positive) 22 Aug 2014
Lentiviral vector containing the human liver and erythroid pyruvate kinase (PKLR) gene
EU/3/14/1330
Treatment of pyruvate kinase deficiency Active (positive) 22 Aug 2014
variant of recombinant human fibroblast growth factor 19
EU/3/14/1329
Treatment of primary biliary cirrhosis Withdrawn 22 Aug 2014
4-{[(2R,3S,4R,5S)-4-(4-chloro-2-fluoro-phenyl)-3-(3-chloro-2-fluoro-phenyl)-4-cyano-5-(2,2-dimethyl-propyl)-pyrrolidine-2-carbonyl]-amino}-3-methoxy-benzoic acโ€ฆ
EU/3/14/1328
Treatment of acute myeloid leukaemia Withdrawn 22 Aug 2014
vector based on an adeno-associated virus serotype 2 backbone, pseudo-serotyped with a type 8 capsid, which carries the coding sequence of the human TYMP gene โ€ฆ
EU/3/14/1326
Treatment of mitochondrial neurogastrointestinal encephalomyopathy (MNGIE) Active (positive) 22 Aug 2014
obinutuzumab
EU/3/14/1325
88 clinical trials →
Treatment of diffuse large B-cell lymphoma Withdrawn 22 Aug 2014
obinutuzumab
EU/3/14/1325
88 clinical trials →
Treatment of diffuse large B-cell lymphoma Active (positive) 22 Aug 2014
2-(2-Methyl-5-nitro-1H-imidazol-1-yl)ethylsulfamide
EU/3/14/1324
Treatment of small cell lung cancer Active (positive) 22 Aug 2014
[5-Amino-1-(4-fluoro-phenyl)-1H-pyrazol-4-yl]-[3-(2,3-dihydroxy-propoxy)-phenyl]-methanone
EU/3/14/1323
Treatment of pancreatic cancer Active (positive) 22 Aug 2014
Humanised IgG1 monoclonal antibody against human KIR3DL2
EU/3/14/1322
Treatment of cutaneous T-cell lymphoma Active (positive) 22 Aug 2014
adeno-associated viral vector serotype 8 containing the human UGT1A1 gene (volrubigene ralaparvovec)
EU/3/14/1321
Treatment of Crigler-Najjar syndrome Withdrawn 22 Aug 2014
recombinant human diamine oxidase
EU/3/14/1320
Treatment of mastocytosis Active (positive) 22 Aug 2014
recombinant factor VIIa modified with three terminal repeats derived from the ฮฒ chain of human chorionic gonadotropin
EU/3/14/1319
Treatment of haemophilia B Active (positive) 22 Aug 2014
ulinastatin
EU/3/14/1318
3 clinical trials →
Treatment of acute pancreatitis Active (positive) 22 Aug 2014
(Z)-3-(3-(3,5-bis(trifluoromethyl)phenyl)-1H-1,2,4-triazol-1-yl)-N'-(pyrazin-2-yl)acrylohydrazide
EU/3/14/1317
Treatment of diffuse large B-cell lymphoma Active (positive) 22 Aug 2014
recombinant factor VIIa modified with three terminal repeats derived from the ฮฒ chain of human chorionic gonadotropin
EU/3/14/1316
Treatment of haemophilia A Active (positive) 22 Aug 2014
recombinant human apolipoprotein A-I in a complex with phospholipids
EU/3/14/1315
Treatment of apolipoprotein A-I deficiency Active (positive) 22 Aug 2014
recombinant human apolipoprotein A-I in a complex with phospholipids
EU/3/14/1314
Treatment of ATP-binding cassette transporter A1 deficiency Active (positive) 22 Aug 2014
(Z)-3-(3-(3,5-bis(trifluoromethyl)phenyl)-1H-1,2,4-triazol-1-yl)-N'-(pyrazin-2-yl)acrylohydrazide
EU/3/14/1313
Treatment of acute myeloid leukaemia Active (positive) 22 Aug 2014
recombinant factor VIIa modified with three terminal repeats derived from the ฮฒ chain of human chorionic gonadotropin
EU/3/14/1312
Treatment of congenital factor VII deficiency Active (positive) 22 Aug 2014
Gevokizumab
EU/3/14/1311
Treatment of Schnitzler syndrome Withdrawn 22 Aug 2014
EU/3/14/1310
Treatment of Fabry disease Active (positive) 22 Aug 2014
17ฮฑ,21-Dihydroxy-16ฮฑ-methyl-pregna-1,4,9(11)-triene-3,20-dione (vamorolone)
EU/3/14/1309 · now authorised as Agamree
Treatment of Duchenne muscular dystrophy Active (positive) 22 Aug 2014
sodium ascorbate;menadione sodium bisulfite
EU/3/14/1308
Treatment of autosomal dominant polycystic liver disease Active (positive) 22 Aug 2014
retinol
EU/3/14/1307
Prevention of bronchopulmonary dysplasia Active (positive) 22 Aug 2014
cysteamine bitartrate (gastroresistant) (mercaptamine)
EU/3/14/1306
Treatment of Huntingtonโ€™s disease Active (positive) 29 Jul 2014
Humanised recombinant monoclonal antibody against epidermal growth factor receptor conjugated to maleimidocaproyl monomethylauristatin F(depatuxizumab mafodotin
EU/3/14/1305
Treatment of glioma Withdrawn 29 Jul 2014
Eculizumab
EU/3/14/1304 · now authorised as Soliris
12 clinical trials →
Treatment myasthenia gravis Active (positive) 29 Jul 2014
cediranib
EU/3/14/1303
10 clinical trials →
Treatment of ovarian cancer Active (positive) 29 Jul 2014
Oxytocin
EU/3/14/1302
22 clinical trials →
Treatment of Prader-Willi syndrome Active (positive) 29 Jul 2014
Humanised anti-alpha ฮฝ beta 6 monoclonal antibody
EU/3/14/1301
Treatment of idiopathic pulmonary fibrosis Active (positive) 29 Jul 2014
recombinant fusion protein consisting of a modified form of the extracellular domain of human activin receptor IIB linked to the human IgG1 Fc domainย (luspaterโ€ฆ
EU/3/14/1300 · now authorised as Reblozyl
Treatment of beta thalassaemia intermedia and major Active (positive) 29 Jul 2014
riociguat
EU/3/14/1299
2 clinical trials →
Treatment of systemic sclerosis Withdrawn 29 Jul 2014
synthetic double-stranded siRNA oligonucleotide directed against antithrombin mRNA and covalently linked to a ligand containing three N-acetylgalactosamine resโ€ฆ
EU/3/14/1298
Treatment of haemophilia B Active (positive) 29 Jul 2014
synthetic double-stranded siRNA oligonucleotide directed against antithrombin mRNA and covalently linked to a ligand containing three N-acetylgalactosamine resโ€ฆ
EU/3/14/1297
Treatment of haemophilia A Active (positive) 29 Jul 2014
adeno-associated viral vector serotype 9 containing the human cardiac calsequestrin gene
EU/3/14/1296
Treatment of catecholaminergic polymorphic ventricular tachycardia Active (positive) 29 Jul 2014
Marizomib
EU/3/14/1295
Treatment of plasma cell myeloma Active (positive) 29 Jul 2014
sodium acetate salt of the synthetic peptide H-D-Ala-Ser-Pro-Met-Leu-Val-Ala-Tyr-Asp-D-Ala-OH
EU/3/14/1294
Treatment of necrotising soft tissue infections Active (positive) 29 Jul 2014
recombinant monoclonal antibody to human serum amyloid Pย component (dezamizumab)
EU/3/14/1293
Treatment of AL amyloidosis Withdrawn 29 Jul 2014
carboxy pyrrolidine hexanoyl pyrrolidine carboxylateย (miridesap)
EU/3/14/1292
Treatment of AL amyloidosis Withdrawn 29 Jul 2014
rilotumumab
EU/3/14/1291
Treatment of gastric cancer Withdrawn 29 Jul 2014
adeno-associated viral vector serotype 2 containing the human REP1 gene
EU/3/14/1290
Treatment of choroideraemia Active (positive) 4 Jul 2014
recombinant human alpha-1-microglobulin
EU/3/14/1289
Treatment of pre-eclampsia Withdrawn 4 Jul 2014
Norursodeoxycholic acid
EU/3/14/1288
Treatment of primary sclerosing cholangitis Active (positive) 4 Jul 2014

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How this page is built

Every row is copied from the EMA's orphan designations data, reproduced with acknowledgement of the source. Each substance links to its official EMA page.

A daily job downloads the EMA's orphan designations JSON report and lists every designation, newest first. No AI drafting and no editorial pass. See our editorial standards. The the EMA data on this page was last retrieved on 27 Sep 2026.

Please verify before you rely on this. This page is general information for life-science and pharmaceutical professionals. It is not medical advice, and it has not been reviewed by a clinician โ€” our editorial team holds life-science qualifications, not clinical ones. It is not exhaustive and may not reflect the most recent label change. Always check the official prescribing information (US Prescribing Information or EU SmPC) and speak to your doctor or pharmacist before acting on anything here. Drugs in the same class are not automatically interchangeable, and approvals, brand names and indications differ between the US, the EU/Ireland (EMA/HPRA) and other regions. Spotted an error? Tell us โ€” we correct promptly and log it.