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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 22 of 34
SubstanceIntended useStatusDesignated
Mexiletine hydrochloride
EU/3/13/1189
5 clinical trials →
Treatment of myotonic disorders Active (positive) 7 Oct 2013
recombinant fusion protein linking coagulation factor VIIa with albumin
EU/3/13/1188
Treatment of congenital factor VII deficiency Active (positive) 7 Oct 2013
heterologous human adult liver-derived progenitor cells
EU/3/13/1166
Treatment of citrullinaemia type 2 Active (positive) 17 Aug 2013
recombinant human monoclonal antibody against hepatitis-B virus (active ingredient lenvervimab)
EU/3/13/1156
Prevention of hepatitis-B re-infection following liver transplantation Active (positive) 15 Aug 2013
Idelalisib
EU/3/13/1187
6 clinical trials →
Treatment of splenic marginal-zone lymphoma Withdrawn 5 Aug 2013
Idelalisib
EU/3/13/1186
6 clinical trials →
Treatment of extranodal marginal-zone lymphoma of mucosa-associated lymphoid tissue (MALT lymphoma) Withdrawn 5 Aug 2013
Eculizumab
EU/3/13/1185 · now authorised as Soliris
12 clinical trials →
Treatment of neuromyelitis optica spectrum disorders Active (positive) 5 Aug 2013
EU/3/13/1184
Treatment of sickle cell disease Withdrawn 5 Aug 2013
sacrosidase
EU/3/13/1183
Treatment of congenital sucrase-isomaltase deficiency Active (positive) 5 Aug 2013
cladribine
EU/3/13/1182
7 clinical trials →
Treatment of mastocytosis Active (positive) 5 Aug 2013
Budesonide
EU/3/13/1181 · now authorised as Jorveza
11 clinical trials →
Treatment of eosinophilic oesophagitis Active (positive) 5 Aug 2013
apremilast
EU/3/13/1180
10 clinical trials →
Treatment of Behรงet's Disease Withdrawn 5 Aug 2013
recombinant human growth hormone modified by fusion with two hydrophilic polypeptide chains (somavaratan)
EU/3/13/1179
Treatment of growth hormone deficiency Withdrawn 5 Aug 2013
pegylated recombinant anti-Pseudomonas aeruginosa antibody
EU/3/13/1178
Treatment of Pseudomonas aeruginosa lung infection in cystic fibrosis Withdrawn 5 Aug 2013
chimaeric monoclonal antibody against claudin-18 splice variant 2
EU/3/13/1177
Treatment of pancreatic cancer Active (positive) 5 Aug 2013
human allogeneic bone-marrow-derived osteoblastic-like cells
EU/3/13/1176
Treatment of non-traumatic osteonecrosis Active (positive) 5 Aug 2013
tolvaptan
EU/3/13/1175
2 clinical trials →
Treatment of autosomal dominant polycystic kidney disease Withdrawn 5 Aug 2013
trans-N1-((1R,2S)-2-phenylcyclopropyl)cyclohexane-1,4-diamine bis-hydrochloride
EU/3/13/1174
Treatment of acute myeloid leukaemia Active (positive) 5 Aug 2013
Idelalisib
EU/3/13/1173
6 clinical trials →
Treatment of chronic lymphocytic leukaemia / small lymphocytic lymphoma Withdrawn 5 Aug 2013
Idelalisib
EU/3/13/1172
6 clinical trials →
Treatment of nodal marginal-zone lymphoma Withdrawn 5 Aug 2013
octreotide acetate
EU/3/13/1170
3 clinical trials →
Treatment of acromegaly Withdrawn 5 Aug 2013
cisplatin
EU/3/13/1169
473 clinical trials →
Treatment of osteosarcoma Active (positive) 5 Aug 2013
ex-vivo-expanded autologous human corneal epithelium containing stem cells
EU/3/13/1168
Treatment of limbal stem cell deficiency Active (positive) 17 Jul 2013
heterologous human adult liver-derived progenitor cells
EU/3/13/1167
Treatment of ornithine-translocase deficiency Active (positive) 17 Jul 2013
heterologous human adult liver-derived progenitor cells
EU/3/13/1165
Treatment of N-acetylglutamate synthetase (NAGS) deficiency Active (positive) 17 Jul 2013
heterologous human adult liver-derived progenitor cells
EU/3/13/1164
Treatment of hyperargininaemia Active (positive) 17 Jul 2013
heterologous human adult liver-derived progenitor cells
EU/3/13/1163
Treatment of argininosuccinic aciduria Active (positive) 17 Jul 2013
heterologous human adult liver-derived progenitor cells
EU/3/13/1162
Treatment of citrullinaemia type 1 Active (positive) 17 Jul 2013
heterologous human adult liver-derived progenitor cells
EU/3/13/1161
Treatment of carbamoyl-phosphate synthase-1 deficiency Active (positive) 17 Jul 2013
Idelalisib
EU/3/13/1160
6 clinical trials →
Treatment of lymphoplasmacytic lymphoma Withdrawn 17 Jul 2013
Idelalisib
EU/3/13/1159
6 clinical trials →
Treatment of follicular lymphoma Withdrawn 17 Jul 2013
Dexamethasone sodium phosphate encapsulated in human autologous erythrocytes
EU/3/13/1158
Treatment of ataxia telangiectasia Withdrawn 17 Jul 2013
(S)-3-(1-(9H-purin-6-ylamino)ethyl)-8-chloro-2-phenylisoquinolin-1(2H)-one
EU/3/13/1157
Treatment of follicular lymphoma Active (positive) 17 Jul 2013
allogeneic motor neuron progenitor cells derived from human embryonic stem cells
EU/3/13/1155
Treatment of amyotrophic lateral sclerosis Active (positive) 17 Jul 2013
Fosbretabulin tromethamine
EU/3/13/1154
Treatment of ovarian cancer Withdrawn 17 Jul 2013
daratumumab
EU/3/13/1153
98 clinical trials →
Treatment of plasma-cell myeloma Expired 17 Jul 2013
(1-methyl-2-nitro-1H-imidazole-5-yl)methyl N,N'-bis(2-bromoethyl)diamidophosphate
EU/3/13/1152
Treatment of pancreatic cancer Withdrawn 17 Jul 2013
belinostat
EU/3/13/1151
2 clinical trials →
Treatment of malignant thymoma Active (positive) 17 Jul 2013
human haemin
EU/3/13/1149
Prevention of ischaemia/reperfusion injury associated with solid organ transplantation Active (positive) 17 Jul 2013
autologous bone-marrow-derived mesenchymal stromal cells secreting neurotrophic factors
EU/3/13/1148
Treatment of amyotrophic lateral sclerosis Active (positive) 17 Jul 2013
Granulocyte-macrophage colony-stimulating factor
EU/3/13/1147
Treatment of pulmonary alveolar proteinosis Active (positive) 17 Jul 2013
copper meso-5,15-bis[3-[(1,2-dicarba-closo-dodecaboranyl)methoxy]phenyl]-meso-10,20-dinitroporphyrin
EU/3/13/1138
Treatment of squamous-cell carcinoma of the head and neck in patients undergoing radiotherapy Withdrawn 27 Jun 2013
unoprostone isopropyl
EU/3/13/1146
Treatment of retinitis pigmentosa Withdrawn 19 Jun 2013
genetically modified serotype 5/3 adenovirus coding for granulocyte-macrophage colony-stimulating factor
EU/3/13/1145
Treatment of soft tissue sarcoma Withdrawn 19 Jun 2013
recombinant human alpha-N-acetylglucosaminidase
EU/3/13/1144
Treatment of mucopolysaccharidosis type IIIB (Sanfilippo B syndrome) Withdrawn 19 Jun 2013
immortalised human C3A hepatoblastoma cells
EU/3/13/1143
Treatment of acute liver failure Withdrawn 19 Jun 2013
adenovirus associated viral vector serotype 5 containing the human pde6ฮฒ gene
EU/3/13/1142
Treatment of retinitis pigmentosa Active (positive) 19 Jun 2013
synthetic double-stranded siRNA oligonucleotide directed against the keratin 6a N171K mutation
EU/3/13/1141
Treatment of pachyonychia congenita Active (positive) 19 Jun 2013
expanded human allogeneic neural retinal progenitor cells extracted from neural retina
EU/3/13/1140
Treatment of retinitis pigmentosa Active (positive) 19 Jun 2013
sodium chlorite
EU/3/13/1139
Treatment of amyotrophic lateral sclerosis Active (positive) 19 Jun 2013
4,6,4'-trimethylangelicin
EU/3/13/1137
Treatment of cystic fibrosis Active (positive) 19 Jun 2013
5-[1-(2,6-Dichlorobenzyl)piperidin-4-ylmethoxy]quinazoline-2,4-diamine dihydrochloride
EU/3/13/1136
Treatment of 5q spinal muscular atrophy Active (positive) 7 Jun 2013
recombinant human nerve growth factor
EU/3/13/1135
Treatment of retinitis pigmentosa Active (positive) 7 Jun 2013
autologous CD34+ cells transduced with a lentiviral vector containing the human ADA gene
EU/3/13/1134
Treatment of adenosine-deaminase-deficient severe combined immunodeficiency Active (positive) 7 Jun 2013
Maribavir
EU/3/13/1133 · now authorised as Livtencity
7 clinical trials →
Treatment of cytomegalovirus disease in patients with impaired cell-mediated immunity Active (positive) 7 Jun 2013
N-methyl-4-({4-[({3-methyl(methylsulfonyl)aminopyrazin-2-yl}methyl)amino]-5-(trifluoromethyl)pyrimidin-2-yl}amino)benzamide hydrochloride (defactinib)
EU/3/13/1132
Treatment of malignant mesothelioma Withdrawn 7 Jun 2013
recombinant human CXCL8 mutant
EU/3/13/1131
Treatment of cystic fibrosis Active (positive) 7 Jun 2013
recombinant human transglutaminase 1 encapsulated into liposomes
EU/3/13/1130
Treatment of transglutaminase-1-deficient autosomal recessive congenital ichthyosis Active (positive) 7 Jun 2013
allogeneic bone-marrow-derived mesenchymal cells expanded ex vivo in synthetic media
EU/3/13/1129
Treatment of graft-versus-host disease Active (positive) 7 Jun 2013
N-[2,6-bis(1-methylethyl)phenyl]-N'-[[1-[4-(dimethylamino) phenyl]cyclopentyl]methyl]urea, hydrochloride salt
EU/3/13/1128
Treatment of adrenocortical carcinoma Active (positive) 7 Jun 2013
Inotuzumab ozogamicin
EU/3/13/1127 · now authorised as Besponsa
13 clinical trials →
Treatment of B-cell acute lymphoblastic leukaemia Active (positive) 7 Jun 2013
Mexiletine hydrochloride
EU/3/13/1126
5 clinical trials →
Treatment of non-dystrophic myotonia Active (positive) 7 Jun 2013
(S)-3-(1-(9H-purin-6-ylamino)ethyl)-8-chloro-2-phenylisoquinolin-1(2H)-one (duvelisib)
EU/3/13/1125
Treatment of chronic lymphocytic leukaemia / small lymphocytic lymphoma Active (positive) 26 Apr 2013
2-Hydroxypropyl-ฮฒ-cyclodextrin
EU/3/13/1124
Treatment of Niemann-Pick's disease, type C Active (positive) 26 Apr 2013
nintedanib
EU/3/13/1123
7 clinical trials →
Treatment of idiopathic pulmonary fibrosis Withdrawn 26 Apr 2013
R,S-O-(3-piperidino-2-hydroxy-1-propyl)-nicotinic acid amidoxime dihydrochloride
EU/3/13/1122
Treatment of Duchenne muscular dystrophy Active (positive) 26 Apr 2013
lenvatinib
EU/3/13/1121
124 clinical trials →
Treatment of papillary thyroid cancer Withdrawn 26 Apr 2013
4-[2-(6-Methylpyridin-2-yl)-5,6-dihydro-4H-pyrrolo[1,2-b]pyrazol-3-yl]-quinoline-6-carboxamide monohydrate
EU/3/13/1120
Treatment of glioma Withdrawn 26 Apr 2013
lenvatinib
EU/3/13/1119
124 clinical trials →
Treatment of follicular thyroid cancer Withdrawn 26 Apr 2013
zoledronic acid
-
11 clinical trials →
Treatment of complex regional pain syndrome Negative 17 Apr 2013
Cyclo[L-alanyl-L-seryl-L-isoleucyl-L-prolyl-L-prolyl-L-glutaminyl-L-lysyl-L-tyrosyl-D-prolyl-L-prolyl-(2S)-2-aminodecanoyl-L-alpha-glutamyl-L-threonyl]acetate โ€ฆ
EU/3/13/1114
Treatment of congenital alpha-1 antitrypsin deficiency Active (positive) 20 Mar 2013
recombinant human tripeptidyl-peptidase 1
EU/3/13/1118 · now authorised as Brineura
Treatment of neuronal ceroid lipofuscinosis type 2 Active (positive) 12 Mar 2013
ramiprilat
EU/3/13/1117
Treatment of Stargardt's disease Withdrawn 12 Mar 2013
Mepolizumab
EU/3/13/1116
16 clinical trials →
Treatment of Churg-Strauss syndrome Withdrawn 12 Mar 2013
1-[(3R)-3-[4-amino-3-(4-phenoxyphenyl)-1H-pyrazolo[3,4 d]pyrimidin-1-yl]-1-piperidinyl]-2-propen-1-one (ibrutinib)
EU/3/13/1115
Treatment of mantle cell lymphoma Withdrawn 12 Mar 2013
murine IgM monoclonal antibody binding to alpha beta T-cell receptor
EU/3/13/1113
Prevention of graft rejection following solid organ transplantation Withdrawn 12 Mar 2013
Poloxamer 188
EU/3/13/1112
Treatment of sickle cell disease Withdrawn 12 Mar 2013
Gevokizumab
EU/3/13/1111
Treatment of chronic non-infectious uveitis Withdrawn 12 Mar 2013
recombinant human heat-shock protein 70
EU/3/13/1110
Treatment of Niemann-Pick's disease, type C Withdrawn 12 Mar 2013
4-[2-(6-Methylpyridin-2-yl)-5,6-dihydro-4H-pyrrolo[1,2-b]pyrazol-3-yl]-quinoline-6-carboxamide monohydrate
EU/3/13/1109
Treatment of hepatocellular carcinoma Withdrawn 12 Mar 2013
2-[4-Methoxy-3-(2-m-tolyl-ethoxy)-benzoylamino]-indan-2-carboxylic acid
EU/3/13/1108
Treatment of systemic sclerosis Withdrawn 12 Mar 2013
recombinant adeno-associated viral vector containing the human retinoschisin gene
EU/3/13/1107
Treatment of X-linked juvenile retinoschisis Active (positive) 12 Mar 2013
L-asparaginase encapsulated in erythrocytes
EU/3/13/1106
Treatment of acute myeloid leukaemia Active (positive) 8 Feb 2013
Humanised monoclonal antibody against myostatin (domagrozumab)
EU/3/13/1105
Treatment of Duchenne muscular dystrophy Withdrawn 8 Feb 2013
terguride
EU/3/13/1104
Treatment of systemic sclerosis Withdrawn 8 Feb 2013
treprostinil sodium
EU/3/13/1103 · now authorised as Trepulmix
4 clinical trials →
Treatment of chronic thromboembolic pulmonary hypertension Active (positive) 8 Feb 2013
Cyclo-Cys-Gly-Gln-Arg-Glu-Thr-Pro-Glu-Gly-Ala-Glu-Ala-Lys-Pro-Trp-Tyr-Cys
EU/3/13/1102
Treatment of high-altitude pulmonary oedema Active (positive) 8 Feb 2013
progesterone
EU/3/13/1101
9 clinical trials →
Treatment of moderate and severe traumatic brain injury Withdrawn 8 Feb 2013
Humanised IgG1 kappa antibody against serum amyloid A and AL amyloid
EU/3/13/1100
Treatment of amyloid light-chain amyloidosis Active (positive) 8 Feb 2013
recombinant adeno-associated viral vector containing the human CNGB3 gene
EU/3/13/1099
Treatment of achromatopsia caused by mutations in the CNGB3 gene Active (positive) 8 Feb 2013
Encapsulated human retinal pigment epithelial cell line transfected with plasmid vector expressing human ciliary neurotrophic factor
EU/3/12/1098
Treatment of retinitis pigmentosa Active (positive) 24 Jan 2013
lenalidomide
EU/3/12/1097
167 clinical trials →
Treatment of follicular lymphoma Withdrawn 24 Jan 2013
terguride
EU/3/12/1096
Treatment of systemic sclerosis Withdrawn 24 Jan 2013
adeno-associated viral vector serotype 9 containing the human N-acetylglucosaminidase-alpha gene
EU/3/12/1095
Treatment of mucopolysaccharidosis type IIIB (Sanfilippo B syndrome) Withdrawn 24 Jan 2013
modified recombinant human C-type natriuretic peptide (Vosoritide)
EU/3/12/1094 · now authorised as Voxzogo
Treatment of achondroplasia Active (positive) 24 Jan 2013
1,2:5,6-Dianhydrogalactitol
EU/3/12/1093
Treatment of glioma Active (positive) 24 Jan 2013
chimeric monoclonal antibody against claudin 6
EU/3/12/1092
Treatment of ovarian cancer Withdrawn 24 Jan 2013
autologous CD34+ haematopoietic stem cells transduced with lentiviral vector encoding the human betaA-T87Q-globin gene (betibeglogene autotemcel)
EU/3/12/1091
Treatment of beta thalassaemia intermedia and major Withdrawn 24 Jan 2013
recombinant human monoclonal antibody of the IgG1 kappa class against prostate stem-cell antigen
EU/3/12/1090
Treatment of pancreatic cancer Active (positive) 24 Jan 2013
choline tetrathiomolybdate
EU/3/12/1089
Treatment of Wilson's disease Active (positive) 24 Jan 2013

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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.