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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 17 of 34
SubstanceIntended useStatusDesignated
teriparatide
EU/3/16/1689
4 clinical trials →
Treatment of hypoparathyroidism Active (positive) 27 Jun 2016
setmelanotide
EU/3/16/1688
4 clinical trials →
Treatment of Prader-Willi syndrome Active (positive) 27 Jun 2016
recombinant protein derived from the saliva of the Ornithodoros moubata tick (nomacopan)
EU/3/16/1687
Treatment of Guillain-Barrรฉ syndrome Active (positive) 27 Jun 2016
recombinant humanised monoclonal IgG2 lambda antibody against human sclerostin
EU/3/16/1686
Treatment of osteogenesis imperfecta Active (positive) 27 Jun 2016
molgramostim
EU/3/16/1685
3 clinical trials →
Treatment of acute respiratory distress syndrome (ARDS) Active (positive) 27 Jun 2016
modified mRNA encoding the UGT1A1 protein
EU/3/16/1684
Treatment of Crigler-Najjar syndrome Active (positive) 27 Jun 2016
melatonin
EU/3/16/1683
23 clinical trials →
Treatment of neonatal sepsis Active (positive) 27 Jun 2016
Humanised monoclonal antibody targeting interleukin-15
EU/3/16/1681
Treatment of eosinophilic oesophagitis Active (positive) 27 Jun 2016
Humanised anti-IL-6 receptor monoclonal antibody (satralizumab)
EU/3/16/1680 · now authorised as Enspryng
Treatment of neuromyelitis optica spectrum disorders Active (positive) 27 Jun 2016
eflornithine
EU/3/16/1679
6 clinical trials →
Treatment of glioma Active (positive) 27 Jun 2016
Donor T lymphocytes depleted ex vivo of host alloreactive T cells using photodynamic treatment-
EU/3/16/1678 · now authorised as Luxceptar
Treatment in haematopoietic stem cell transplantation Withdrawn 27 Jun 2016
diclofenamide
EU/3/16/1677
Treatment of periodic paralysis Active (positive) 27 Jun 2016
Cyclocreatine
EU/3/16/1676
Treatment of creatine deficiency syndromes Withdrawn 27 Jun 2016
citric acid monohydrate
EU/3/16/1675
Treatment of acute liver failure Active (positive) 27 Jun 2016
allogeneic donor-derived ex-vivo expanded T lymphocytes transduced with a retroviral vector containing inducible caspase 9 and truncated CD19
EU/3/16/1674
Treatment in haematopoietic stem cell transplantation Withdrawn 27 Jun 2016
pyridoxine;l-pyroglutamic acid
EU/3/16/1673
Treatment of fragile X syndrome Active (positive) 27 Jun 2016
3-(5-Amino-2-methyl-4-oxoquinazolin-3(4H)-yl)piperidine-2,6-dione hydrochloride
EU/3/16/1672
Treatment of diffuse large B-cell lymphoma Withdrawn 27 Jun 2016
2'-O-(2-Methoxyethyl) phosphorothioate antisense oligonucleotide targeting the growth hormone receptor
EU/3/16/1671
Treatment of acromegaly Withdrawn 27 Jun 2016
vemurafenib
EU/3/16/1670
11 clinical trials →
Treatment of Langerhans' cell histiocytosis Active (positive) 30 May 2016
temsirolimus
EU/3/16/1669
4 clinical trials →
Treatment of adrenoleukodystrophy Active (positive) 30 May 2016
sodium nitrite;ethylenediaminetetraacetic acid
EU/3/16/1668
Treatment of cystic fibrosis Active (positive) 30 May 2016
rovalpituzumab tesirine
EU/3/16/1667
Treatment of small cell lung cancer Withdrawn 30 May 2016
rimiducid
EU/3/16/1666
8 clinical trials →
Treatment of graft-versus-host disease Withdrawn 30 May 2016
recombinant adeno-associated viral vector containing the human RPGR gene
EU/3/16/1665
Treatment of retinitis pigmentosa caused by mutations in the RPGR gene Active (positive) 30 May 2016
polyethylene glycol-modified human recombinant truncated cystathionine beta-synthase (pegtibatinase)
EU/3/16/1664
Treatment of homocystinuria Active (positive) 30 May 2016
pentosan polysulfate sodium
EU/3/16/1663
3 clinical trials →
Treatment of interstitial cystitis Active (positive) 30 May 2016
H-Phe-Ser-Arg-Tyr-Ala-Arg-OH acetate (Alirinetide)
EU/3/16/1662
Treatment of amyotrophic lateral sclerosis Active (positive) 30 May 2016
Fc- and CDR-modified humanised monoclonal antibody against C5 (ravulizumab)
EU/3/16/1661
Treatment of paroxysmal nocturnal haemoglobinuria Withdrawn 30 May 2016
autologous CD34+ cells transduced with lentiviral vector encoding the human beta globin gene
EU/3/16/1660
Treatment of beta thalassaemia intermedia and major Active (positive) 30 May 2016
4-[(2E)-1-oxo-3-(2,6,6-trimethyl-1-cyclohexen-1-yl)-2-propen-1-yl]-1-piperazinecarboxamide
EU/3/16/1658
Treatment of retinitis pigmentosa Withdrawn 30 May 2016
(R)-6-(2-fluorophenyl)-N-(3-(2-((2-methoxyethyl)amino)ethyl)phenyl)-5,6-dihydrobenzo[h]quinazolin-2-amine dihydrochloride (derazantinib)
EU/3/16/1657
Treatment of biliary tract cancer Active (positive) 30 May 2016
(S)-ethyl 2-amino-3-(4-(2-amino-6((R)-1-(4-chloro-2-(3-methyl-1H-pyrazol-1-yl)phenyl)-2,2,2-trifluoroethoxy)pyrimidin-4-yl)phenyl)propanoate
EU/3/09/661 · now authorised as Xermelo
Treatment of carcinoid syndrome Active (positive) 30 May 2016
Tyr-Met-Phe-Pro-Asn-Ala-Pro-Tyr-Leu, Ser-Gly-Gln-Ala-Tyr-Met-Phe-Pro-Asn-Ala-Pro-Tyr-Leu-Pro-Ser-Cys-Leu-Glu-Ser, Arg-Ser-Asp-Glu-Leu-Val-Arg-His-His-Asn-Met-Hโ€ฆ
EU/3/16/1656
Treatment of malignant mesothelioma Active (positive) 28 Apr 2016
Tyr-Met-Phe-Pro-Asn-Ala-Pro-Tyr-Leu, Ser-Gly-Gln-Ala-Tyr-Met-Phe-Pro-Asn-Ala-Pro-Tyr-Leu-Pro-Ser-Cys-Leu-Glu-Ser, Arg-Ser-Asp-Glu-Leu-Val-Arg-His-His-Asn-Met-Hโ€ฆ
EU/3/16/1655
Treatment of acute myeloid leukaemia Active (positive) 28 Apr 2016
S-acetyl-(S)-4'-phosphopantetheine, calcium salt
EU/3/16/1654
Treatment of pantothenate-kinase-associated neurodegeneration Active (positive) 28 Apr 2016
resiquimod
EU/3/16/1653
Treatment of cutaneous T-cell lymphoma Active (positive) 28 Apr 2016
recombinant human cerebral dopamine neurotrophic factor
EU/3/16/1652
Treatment of amyotrophic lateral sclerosis Active (positive) 28 Apr 2016
recombinant adeno-associated viral vector serotype 9 carrying the gene for the human E6-AP ubiquitin protein ligase
EU/3/16/1651
Treatment of Angelman syndrome Active (positive) 28 Apr 2016
N-carboxymethyl-glycyl-L-threonyl-L-histidyl-L-3,3-diphenylalanyl-L-piperidincarboxy-3-yl-L-arginyl-L-S-methylthio-cystyl-L-arginyl-L-tryptophyl-aminohexanyl-Nโ€ฆ
EU/3/16/1650
Treatment of beta thalassaemia intermedia and major Withdrawn 28 Apr 2016
Humanised recombinant IgG4 anti-human tau antibody (tilavonemab)
EU/3/16/1649
Treatment of progressive supranuclear palsy Withdrawn 28 Apr 2016
Human/murine chimeric monoclonal antibody against endoglin (carotuximab)
EU/3/16/1648
Treatment of soft tissue sarcoma Withdrawn 28 Apr 2016
Fluocinolone acetonide
EU/3/16/1647
Treatment of non-infectious uveitis Withdrawn 28 Apr 2016
4-hydroxyandrostenedione;serenoa serrulata;alpha lipoic acid
EU/3/16/1646
9 clinical trials →
Treatment of multiple symmetric lipomatosis Active (positive) 28 Apr 2016
cannabidiol
EU/3/16/1645
16 clinical trials →
Prevention of graft-versus-host disease Active (positive) 28 Apr 2016
brincidofovir
EU/3/16/1644
Prevention of cytomegalovirus disease Active (positive) 28 Apr 2016
autologous stromal vascular cell fraction from adipose tissue
EU/3/16/1643
Treatment of systemic sclerosis Withdrawn 28 Apr 2016
autologous dermal fibroblasts genetically modified ex vivo with a lentiviral vector containing the human COL7A1 gene
EU/3/16/1642
Treatment of epidermolysis bullosa Active (positive) 28 Apr 2016
antisense oligonucleotide complementary to the exonic splicer enhancer sequence at intron 26 of the centrosomal protein 290 pre-mRNA
EU/3/16/1641
Treatment of Leber's congenital amaurosis Active (positive) 28 Apr 2016
2-methyl-1-[(4-[6-(trifluoromethyl)pyridin-2-yl]-6-{[2-(trifluoromethyl)pyridin-4-yl]amino}-1,3,5-triazin-2-yl)amino]propan-2-ol methanesulfonate (enasidenib)
EU/3/16/1640
Treatment of acute myeloid leukaemia Active (positive) 28 Apr 2016
(1E,6E)-1,7-bis(3,4-dimethoxyphenyl)-4-cyclobutylmethyl-1,6-heptadiene-3,5-dione
EU/3/16/1639
Treatment of X-linked spinal and bulbar muscular atrophy (Kennedy's disease) Active (positive) 28 Apr 2016
ubenimex
EU/3/16/1638
Treatment of pulmonary arterial hypertension Active (positive) 21 Mar 2016
synthetic double-stranded siRNA oligonucleotide directed against hydroxyacid oxidase 1 mRNA and covalently linked to a ligand containing three N-acetylgalactosโ€ฆ
EU/3/16/1637 · now authorised as Oxlumo
Treatment of primary hyperoxaluria Active (positive) 21 Mar 2016
sindbis virus envelope pseudotyped lentiviral vector encoding New York oesophageal squamous cell carcinoma-1 protein
EU/3/16/1636
Treatment of soft tissue sarcoma Withdrawn 21 Mar 2016
N-acetyl-D-mannosamine monohydrate
EU/3/16/1635
Treatment of GNE myopathy Active (positive) 21 Mar 2016
Glucopyranosyl lipid A stable emulsion and recombinant New York oesophageal squamous cell carcinoma-1 protein
EU/3/16/1634
Treatment of soft tissue sarcoma Withdrawn 21 Mar 2016
Fosbretabulin tromethamine
EU/3/16/1633
Treatment of gastro-entero-pancreatic neuroendocrine tumours Withdrawn 21 Mar 2016
Florilglutamic acid (18F)
EU/3/16/1632
Diagnosis of hepatocellular carcinoma Withdrawn 21 Mar 2016
Florilglutamic acid (18F)
EU/3/16/1631
Diagnosis of glioma Withdrawn 21 Mar 2016
Fenretinide
EU/3/16/1630
2 clinical trials →
Treatment of cutaneous T-cell lymphoma Withdrawn 21 Mar 2016
exenatide
EU/3/16/1629
2 clinical trials →
Treatment of idiopathic intracranial hypertension Active (positive) 21 Mar 2016
Diaspirin cross-linked haemoglobin
EU/3/16/1628
Treatment of oesophageal cancer Active (positive) 21 Mar 2016
allogeneic Epstein-Barr virus specific cytotoxic T lymphocytes (Tabelecleucel)
EU/3/16/1627 · now authorised as Ebvallo
Treatment of post-transplantation lymphoproliferative disorders Active (positive) 21 Mar 2016
acalabrutinib
EU/3/16/1626
48 clinical trials →
Treatment of lymphoplasmacytic lymphoma Active (positive) 21 Mar 2016
acalabrutinib
EU/3/16/1625
48 clinical trials →
Treatment of mantle cell lymphoma Withdrawn 21 Mar 2016
acalabrutinib
EU/3/16/1624
48 clinical trials →
Treatment of chronic lymphocytic leukaemia / small lymphocytic lymphoma Withdrawn 21 Mar 2016
adeno-associated viral vector serotype 8 encoding human ornithine transcarbamylase (avalotcagene ontaparvovec)
EU/3/16/1623
Treatment of ornithine transcarbamylase deficiency Active (positive) 21 Mar 2016
adeno-associated viral vector serotype 5 containing a B-domain deleted variant of human coagulation factor VIII gene
EU/3/16/1622 · now authorised as Roctavian; Roctavian
Treatment of haemophilia A Active (positive) 21 Mar 2016
Delta-9-tetrahydrocannabinol and cannabidiol from extracts of the Cannabis sativa L. plant
EU/3/16/1621
Treatment of glioma Active (positive) 17 Feb 2016
allogeneic fetal human retinal progenitor cells expanded ex vivo
EU/3/16/1620
Treatment of retinitis pigmentosa Active (positive) 17 Feb 2016
DNA plasmid encoding a recombinant fusion protein consisting of the extracellular domain of human TNFฮฑ p55 receptor linked to the human IgG1 Fc domain
EU/3/16/1619
Treatment of non-infectious uveitis Active (positive) 17 Feb 2016
venetoclax
EU/3/16/1617
204 clinical trials →
Treatment of acute myeloid leukaemia Withdrawn 17 Feb 2016
diclofenamide
EU/3/16/1616
Treatment of periodic paralysis Active (positive) 17 Feb 2016
2-Ethylbutyl (2S)-2-{[(S)-{[(2R,3S,4R,5R)-5-(4-aminopyrrolo[2,1-f][1,2,4]triazin-7-yl)-5-cyano-3,4-dihydroxytetrahydrofuran-2-yl]methoxy}(phenoxy)phosphoryl]amโ€ฆ
EU/3/16/1615
Treatment of Ebola virus disease Active (positive) 17 Feb 2016
tolfenamic acid
EU/3/16/1614
treatment of behavioural variant frontotemporal dementia Active (positive) 17 Feb 2016
tolfenamic acid
EU/3/16/1613
Treatment of progressive supranuclear palsy Active (positive) 17 Feb 2016
Methyl 3-((2R)-2-hydroxy-4-(((((S)-1-methoxy-1-oxopropan-2-yl) amino)(phenoxy)phosphoryl)oxy)-3,3-dimethylbutanamido)propanoate
EU/3/16/1612
Treatment of pantothenate-kinase-associated neurodegeneration Withdrawn 17 Feb 2016
ex-vivo-expanded autologous fibroblasts transduced with lentiviral vector containing the COL7A1 gene
EU/3/16/1611
Treatment of epidermolysis bullosa Active (positive) 17 Feb 2016
arsenic trioxide
EU/3/16/1610
11 clinical trials →
Treatment of acute myeloid leukaemia Active (positive) 17 Feb 2016
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/3/16/1608
Treatment of C3 glomerulopathy Active (positive) 17 Feb 2016
N-(4-Methoxyphenyl)-N,2,6-trimethylfuro[2,3-d]pyrimidin-4-amine
EU/3/16/1618
Treatment of glioma Active (positive) 16 Feb 2016
glibenclamide
EU/3/15/1589 · now authorised as Amglidia
Treatment of neonatal diabetes Active (positive) 15 Jan 2016
Entolimod
EU/3/15/1607
Treatment of acute radiation syndrome Withdrawn 11 Jan 2016
(S)-N-(5-((R)-2-(2,5-difluorophenyl)pyrrolidin-1-yl)pyrazolo[1,5-a]pyrimidin-3-yl)-3-hydroxypyrrolidine-1-carboxamide hydrogen sulfateย (larotrectinib)
EU/3/15/1606
Treatment of soft tissue sarcoma Withdrawn 11 Jan 2016
synthetic double-stranded oligomer specific to the SERPINA1 gene and containing a cholesterol-conjugated, acyclic nucleobase analogue
EU/3/15/1605
Treatment of congenital alpha-1 antitrypsin deficiency Withdrawn 11 Jan 2016
two allogeneic irradiated pancreatic tumour cell lines
EU/3/15/1604
Treatment of pancreatic cancer Withdrawn 11 Jan 2016
Live attenuated Listeria monocytogenes delta actA/delta inlB strain expressing human mesothelin
EU/3/15/1603
Treatment of pancreatic cancer Withdrawn 11 Jan 2016
Live attenuated Listeria monocytogenes transfected with plasmids encoding the HPV-16E7 protein fused to a truncated fragment of the Lm protein listeriolysin O
EU/3/15/1602
Treatment of anal cancer Withdrawn 11 Jan 2016
sodium benzoate
EU/3/15/1601
Treatment of argininosuccinic aciduria Active (positive) 11 Jan 2016
sodium benzoate
EU/3/15/1600
Treatment of hyperargininaemia Active (positive) 11 Jan 2016
Adeno-associated viral vector serotype rh10 containing the human factor IX gene for the treatment of haemophilia B-
EU/3/15/1599
Treatment of haemophilia B Withdrawn 14 Dec 2015
2-(2-Chlorobenzylidene)hydrazinecarboximidamide acetate
EU/3/15/1598
Treatment of Charcot-Marie-Tooth disease Active (positive) 14 Dec 2015
sodium (2R,3S,5R)-5-(4-amino-2-oxo-1,3,5-triazin-1(2H)-yl)-2-(hydroxymethyl)tetrahydrofuran-3-yl ((2R,3S,5R)-5-(2-amino-6-oxo-1H-purin-9(6H)-yl)-3-hydroxytetraโ€ฆ
EU/3/15/1597
Treatment of acute myeloid leukaemia Withdrawn 14 Dec 2015
bilayer engineered collagen hydrogel-based skin graft composed of autologous keratinocytes and fibroblasts
EU/3/15/1596
Treatment of partial deep dermal and full-thickness burns Active (positive) 14 Dec 2015
live attenuated Listeria monocytogenes bioengineered with a chimeric human epidermal growth factor receptor 2 fused to a truncated form of the Lm protein listeโ€ฆ
EU/3/15/1595
Treatment of osteosarcoma Active (positive) 14 Dec 2015
Live attenuated Listeria monocytogenes delta actA/delta inlB strain expressing human mesothelin
EU/3/15/1594
Treatment of malignant mesothelioma Withdrawn 14 Dec 2015
imetelstat sodium
EU/3/15/1593
4 clinical trials →
Treatment of myelofibrosis Active (positive) 14 Dec 2015
-[4-Aminobutanoic acid-glycyl-L-glutaminyl-L-arginyl-L-.alpha.-glutamyl-L-threonyl-L-prolyl-L-.alpha.-glutamylglycyl-L-alanyl-L-.alpha.-glutamyl-L-alanyl-L-lysโ€ฆ
EU/3/15/1592
Treatment of pseudohypoaldosteronism 1B Active (positive) 14 Dec 2015
synthetic peptide L-cysteine, L-cysteinylglycyl-L-glutaminyl-L-arginyl-L-.alpha.-glutamyl-L-threonyl-L-prolyl-L-.alpha.-glutamylglycyl-L-alanyl-L-.alpha.-glutaโ€ฆ
EU/3/15/1591
Treatment of pseudohypoaldosteronism 1B Active (positive) 14 Dec 2015
recombinant human monoclonal IgG1 antibody against programmed death ligand-1 (avelumab)
EU/3/15/1590
Treatment of Merkel cell carcinoma Withdrawn 14 Dec 2015
(R)-1-[1-(4-acetoxy-3,3-dimethyl-2-oxo-butyl)-2-oxo-5-(pyridin-2-yl)-2,3-dihydro-1H-benzo[e][1,4]diazepin-3-yl]-3-(3-methylamino-phenyl)-urea (ceclazepide)
EU/3/15/1588
Treatment of gastro-entero-pancreatic neuroendocrine tumours Withdrawn 14 Dec 2015

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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.