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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 13 of 34
SubstanceIntended useStatusDesignated
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
EU/3/18/2086
Treatment of cystic fibrosis Active (positive) 19 Nov 2018
autologous human adipose perivascular stromal cells genetically modified to secrete soluble tumour necrosis factor-related apoptosis-inducing ligand
EU/3/18/2085
Treatment of pancreatic cancer Active (positive) 19 Nov 2018
anetumab ravtansine
EU/3/18/2084
3 clinical trials →
Treatment of ovarian cancer Withdrawn 19 Nov 2018
allogeneic faecal microbiota, pooled
EU/3/18/2083
Treatment of graft-versus-host disease Active (positive) 19 Nov 2018
5-{(1R,2R)-2-[(cyclopropylmethyl)amino]cyclopropyl}-N-(tetrahydro-2H-pyran-4-yl)thiophene-3-carboxamide monohydrochloride
EU/3/18/2082
Treatment of Kabuki syndrome Withdrawn 19 Nov 2018
3-(3-(3,5-Dimethyl-1H-pyrazol-4-yl)propoxy)-4-fluorobenzoic acid
EU/3/18/2081
Treatment of ATTR amyloidosis Withdrawn 19 Nov 2018
Diacerein
-
Treatment of epidermolysis bullosa Negative 8 Nov 2018
recombinant adeno-associated viral vector serotype S3 containing codon-optimised expression cassette encoding human coagulation factor IX variant
EU/3/18/2080
Treatment of haemophilia B Withdrawn 26 Oct 2018
recombinant adeno-associated viral vector containing a bioengineered capsid and a codon-optimised expression cassette to drive the expression of the SQ form ofโ€ฆ
EU/3/18/2079
Treatment of haemophilia A Withdrawn 26 Oct 2018
Peptides YMFPNAPYL, SGQAYMFPNAPYLPSCLES, RSDELVRHHNMHQRNMTKL and PGCNKRYFKLSHLQMHSRKHTG
EU/3/18/2078
Treatment of multiple myeloma Active (positive) 26 Oct 2018
melatonin
EU/3/18/2077
23 clinical trials →
Treatment of acute radiation syndrome Active (positive) 26 Oct 2018
glycine;L-alanine;L-arginine;L-aspartic acid;L-cysteine;L-glutamic acid;L-histidine;L-lysine monohydrate;L-methionine;L-phenylalanine;L-proline;L-serine;L-threโ€ฆ
EU/3/18/2076 · now authorised as Maapliv
2 clinical trials →
Treatment of maple syrup urine disease Active (positive) 26 Oct 2018
gefinitib
EU/3/18/2075
Treatment of Fanconi anaemia type A Active (positive) 26 Oct 2018
avapritinib
EU/3/18/2074 · now authorised as Ayvakyt
8 clinical trials →
Treatment of mastocytosis Active (positive) 26 Oct 2018
autologous CD34+ haematopoietic stem and progenitor cells genetically modified with the lentiviral vector IDUA LV, encoding for the alpha-L-iduronidase cDNA
EU/3/18/2073
Treatment of mucopolysaccharidosis type I Active (positive) 26 Oct 2018
6-(R)-methyl-5-O-(5-amino-5,6-dideoxy-alpha-L-talofuranosyl)-paromamine sulfate
EU/3/18/2072
Treatment of cystic fibrosis Active (positive) 26 Oct 2018
6-(2-hydroxy-2-methylpropoxy)-4-(6-(6-((6-methoxypyridin-3-yl)methyl)-3,6-diazabicyclo[3.1.1]heptan-3-yl)pyridin-3-yl)pyrazolo[1,5-a]pyridine-3-carbonitrile
EU/3/18/2071
Treatment of medullary thyroid carcinoma Withdrawn 26 Oct 2018
tilorone
EU/3/18/2069
Treatment of idiopathic pulmonary fibrosis Active (positive) 24 Aug 2018
somapacitan
EU/3/18/2068 · now authorised as Sogroya
7 clinical trials →
Treatment of growth hormone deficiency Active (positive) 24 Aug 2018
recombinant human monoclonal antibody against mannan-binding lectin-associated serine protease-2
EU/3/18/2067 · now authorised as Yartemlea
Treatment in haematopoietic stem cell transplantation Active (positive) 24 Aug 2018
pemigatinib
EU/3/18/2066 · now authorised as Pemazyre
3 clinical trials →
Treatment of biliary tract cancer Active (positive) 24 Aug 2018
obiltoxaximab
EU/3/18/2065
Treatment of anthrax Withdrawn 24 Aug 2018
Copanlisib
EU/3/18/2064 · now authorised as Aliqopa
4 clinical trials →
Treatment of marginal zone lymphoma Withdrawn 24 Aug 2018
CD34+ haematopoietic stem and progenitor cells with CD3+ T-cells
EU/3/18/2063
Treatment in solid organ transplantation Active (positive) 24 Aug 2018
autologous glioma tumour cells treated with antisense molecule directed against the insulin-like growth factor type 1 receptor
EU/3/18/2061
Treatment of glioma Active (positive) 24 Aug 2018
adeno-associated viral vector serotype 2 containing the human REP1 gene (timrepigene emparvovec)
EU/3/18/2060
Treatment of spinal muscular atrophy Withdrawn 24 Aug 2018
1-(3-methylbutanoyl)-L-aspartyl-L-threonyl-L-histidyl-L-phenylalanyl-L-prolyl-(L-cystinyl-L-isoleucyl-[(N6-(S)-4-carboxy-4-palmitamidobutanoyl)-L-lysinyl]-L-phโ€ฆ
EU/3/18/2058
Treatment of beta thalassaemia intermedia and major Withdrawn 24 Aug 2018
1-(2-hydroxyethyl)-8-{[5-(4-methylpiperazin-1-yl)-2-(trifluoromethoxy) phenyl]amino}-4,5-dihydro-1H-pyrazolo[4,3-h]quinazoline-3-carboxamide fumarate salt (onvโ€ฆ
EU/3/18/2057
Treatment of acute myeloid leukaemia Withdrawn 24 Aug 2018
(S)-(โˆ’)-3-(4-aminophenyl)-2-methoxypropanoic acid
EU/3/18/2056
Treatment of idiopathic pulmonary fibrosis Withdrawn 24 Aug 2018
EU/3/18/2055
Treatment of glioma Active (positive) 24 Aug 2018
tetracosactide
EU/3/18/2054
Treatment of Duchenne muscular dystrophy Active (positive) 31 Jul 2018
tamibarotene
EU/3/18/2053
Treatment of acute myeloid leukaemia Active (positive) 31 Jul 2018
synthetic double-stranded siRNA oligonucleotide directed against lactate dehydrogenase A mRNA and containing four modified nucleosides which form a ligand clusโ€ฆ
EU/3/18/2052
Treatment of primary hyperoxaluria Active (positive) 31 Jul 2018
EU/3/18/2052
Treatment of primary hyperoxaluria Active (positive) 31 Jul 2018
synthetic antisense oligonucleotide directed against human dystrophin pre-mRNA
EU/3/18/2051
Treatment of Duchenne muscular dystrophy Active (positive) 31 Jul 2018
selumetinib
EU/3/18/2050 · now authorised as Koselugo
18 clinical trials →
Treatment of neurofibromatosis type 1 Active (positive) 31 Jul 2018
recombinant human ectonucleotide pyrophosphatase/phosphodiesterase 1 fused to the Fc fragment of IgG1
EU/3/18/2049
treatment of ectonucleotide pyrophosphatase/phosphodiesterase 1 deficiency Active (positive) 31 Jul 2018
N-acetylgalactosamine-conjugated synthetic double-stranded oligomer specific to serpin family A member 1 gene
EU/3/18/2048
Treatment of congenital alpha-1 antitrypsin deficiency Active (positive) 31 Jul 2018
liposomal mannose-1-phosphate
EU/3/18/2047
treatment of phosphomannomutase 2-congenital disorder of glycosylation Active (positive) 31 Jul 2018
givinostat
EU/3/18/2046
Treatment of Becker muscular dystrophy Active (positive) 31 Jul 2018
ex-vivo fused autologous human bone marrow-derived mesenchymal stem cell with allogenic human myoblast
EU/3/18/2045
Treatment of Duchenne muscular dystrophy Active (positive) 31 Jul 2018
allogeneic bone marrow derived mesenchymal stromal cells, ex-vivo expanded
EU/3/18/2044
Treatment of graft-versus-host disease Active (positive) 31 Jul 2018
carboplatin;sodium valproate
EU/3/18/2043
545 clinical trials →
Treatment of glioma Active (positive) 31 Jul 2018
adenovirus associated viral vector serotype 2/8 containing the human CNGA3 gene (entacingene turiparvovec)
EU/3/18/2042
Treatment of achromatopsia Active (positive) 31 Jul 2018
2สน-O-(2-methoxyethyl) antisense oligonucleotide targeting microtubule-associated protein tau pre-mRNA
EU/3/18/2041
treatment of behavioural variant frontotemporal dementia Active (positive) 31 Jul 2018
recombinant human placental growth factor
EU/3/18/2040
Treatment of pre-eclampsia Active (positive) 27 Jun 2018
recombinant adeno-associated viral vector serotype 9 containing human iduronidase gene
EU/3/18/2039
Treatment of mucopolysaccharidosis type I Active (positive) 27 Jun 2018
palovarotene
EU/3/18/2038
Treatment of multiple osteochondromas Withdrawn 27 Jun 2018
omaveloxolone
EU/3/18/2037 · now authorised as Skyclarys
5 clinical trials →
Treatment of Friedreichโ€™s ataxia Active (positive) 27 Jun 2018
L-cystine bis(N-methylpiperazide)
EU/3/18/2036
Treatment of cystinuria Active (positive) 27 Jun 2018
Efpegsomatropin
EU/3/18/2035
Treatment of growth hormone deficiency Active (positive) 27 Jun 2018
Deferiprone
EU/3/18/2034 · now authorised as Upkanz
Treatment of neurodegeneration with brain iron accumulation Active (positive) 27 Jun 2018
codon-optimised human ornithine transcarbamylase mRNA complexed with lipid-based nanoparticles
EU/3/18/2033
Treatment of ornithine transcarbamylase deficiency Withdrawn 27 Jun 2018
carmustine
EU/3/18/2032
Treatment in haematopoietic stem cell transplantation Active (positive) 27 Jun 2018
argon
EU/3/18/2031
Treatment of perinatal asphyxia Active (positive) 27 Jun 2018
20-hydroxyecdysone
EU/3/18/2030
Treatment of Duchenne muscular dystrophy Active (positive) 27 Jun 2018
2-[(2S)-2-methyl-1,4-dioxa-8-azaspiro[4.5]dec-8-yl]-8-nitro-6-trifluoromethyl-4H-1,3-benzothiazin-4-one
EU/3/18/2029
Treatment of tuberculosis Active (positive) 27 Jun 2018
R)-1-(3-(aminomethyl) phenyl)-N-(5-((3-cyanophenyl)(cyclopropylmethylamino)methyl)-2-fluorophenyl)-3-(trifluoromethyl)-1H-pyrazole-5-carboxamide dihydrochloridโ€ฆ
EU/3/18/2028
Treatment of hereditary angioedema Active (positive) 27 Jun 2018
three human monoclonal antibodies against the EBOV glycoprotein
EU/3/18/2027
Treatment of Ebola virus disease Active (positive) 25 May 2018
synthetic double-stranded siRNA oligonucleotide targeted against transthyretin mRNA, with six phosphorothioate linkages in the backbone, and nine 2'-fluoro andโ€ฆ
EU/3/18/2026 · now authorised as Amvuttra
Treatment of transthyretin-mediated amyloidosis (ATTR amyloidosis) Active (positive) 25 May 2018
modified mRNA encoding human methylmalonyl-coenzyme A mutase encapsulated into lipid nanoparticles
EU/3/18/2025
Treatment of methylmalonic acidaemia Withdrawn 25 May 2018
Itraconazole
EU/3/18/2024
35 clinical trials →
Prevention of invasive aspergillosis Active (positive) 25 May 2018
H-Arg-Pro-Lys-Pro-Gln-Gln-Phe-2Thi-Gly-Leu-Met(O2)-NH2-DOTA-225-Actinium
EU/3/18/2023
Treatment of glioma Active (positive) 25 May 2018
Glucagon analogue linked to a human immunoglobulin Fc fragment
EU/3/18/2022
Treatment of congenital hyperinsulinism Active (positive) 25 May 2018
Equine immunoglobulin F(ab')2 fragments targeting Shiga toxin
EU/3/18/2021
Prevention of haemolytic uraemic syndrome Active (positive) 25 May 2018
daratumumab
EU/3/18/2020
98 clinical trials →
Treatment of AL amyloidosis Withdrawn 25 May 2018
Bardoxolone methyl
EU/3/18/2019 · now authorised as Imbarkyd
Treatment of Alport syndrome Active (positive) 25 May 2018
autologous CD4+ and CD8+ T cells expressing a CD19-specific chimeric antigen receptor (lisocabtagene maraleucel)
EU/3/18/2018
Treatment of follicular lymphoma Withdrawn 25 May 2018
ambroxol hydrochloride
EU/3/18/2017
2 clinical trials →
Treatment of amyotrophic lateral sclerosis Active (positive) 25 May 2018
adeno-associated viral vector serotype 9 containing the human CLN1 gene
EU/3/18/2016
Treatment of neuronal ceroid lipofuscinosis Active (positive) 25 May 2018
adeno-associated viral vector serotype 8 containing a functional copy of the codon-optimised F8 cDNA encoding the B-domain deleted human coagulation factor VIII
EU/3/18/2015
Treatment of haemophilia A Withdrawn 25 May 2018
1-(3-{4-[3,4-difluoro-2-(trifluoromethyl)phenyl]piperidine-1-carbonyl}-1H,4H,5H,6H,7H-pyrazolo[3,4- c]pyridin-6-yl)ethan-1-one (Tinlarebant)
EU/3/18/2014
Treatment of Stargardt's disease Active (positive) 25 May 2018
polatuzumab vedotin
EU/3/18/2013 · now authorised as Polivy
23 clinical trials →
Treatment of diffuse large B-cell lymphoma Active (positive) 16 Apr 2018
genetically modified replication-incompetent herpes simplex virus-1 expressing collagen VII (beremagene geperpavec)
EU/3/18/2012 · now authorised as Vyjuvek
Treatment of epidermolysis bullosa Active (positive) 16 Apr 2018
burosumab
EU/3/18/2011 · now authorised as Crysvita
Treatment of phosphaturic mesenchymal tumour Active (positive) 16 Apr 2018
branaplam
EU/3/18/2010
Treatment of spinal muscular atrophy Withdrawn 16 Apr 2018
autologous dendritic cells pulsed with killed ovarian cancer cells and matured by TLR3 ligand ex vivo
EU/3/18/2009
Treatment of ovarian cancer Withdrawn 16 Apr 2018
adeno-associated viral vector serotype 9 encoding miRNA against human superoxide dismutase 1
EU/3/18/2008
Treatment of amyotrophic lateral sclerosis Active (positive) 16 Apr 2018
adeno-associated viral vector serotype 8 containing the human acid alpha-glucosidase gene
EU/3/18/2007
Treatment of glycogen storage disease type II (Pompe's disease) Withdrawn 16 Apr 2018
autologous skeletal myoblasts expanded ex vivo
-
Treatment of oculopharyngeal muscular dystrophy Negative 13 Apr 2018
tazemetostat
EU/3/18/2006
7 clinical trials →
Treatment of malignant mesothelioma Withdrawn 21 Mar 2018
tazemetostat
EU/3/18/2005
7 clinical trials →
Treatment of follicular lymphoma Active (positive) 21 Mar 2018
tazemetostat
EU/3/18/2004
7 clinical trials →
Treatment of diffuse large B-cell lymphoma Withdrawn 21 Mar 2018
ribavirin
EU/3/18/2002
Treatment of Crimean-Congo haemorrhagic fever Active (positive) 21 Mar 2018
recombinant modified ricin toxin A-chain subunit
EU/3/18/2001
Prevention of ricin poisoning Active (positive) 21 Mar 2018
recombinant human acid alpha-glucosidase
EU/3/18/2000
Treatment of glycogen storage disease type II (Pompe's disease) Withdrawn 21 Mar 2018
recombinant adeno-associated viral vector containing a codon-optimized Padua derivative of human coagulation factor IX cDNA (etranacogene dezaparvovec)
EU/3/18/1999 · now authorised as Hemgenix
Treatment of haemophilia B Active (positive) 21 Mar 2018
patidegib
EU/3/18/1998
Treatment of naevoid basal-cell carcinoma syndrome (Gorlin syndrome) Active (positive) 21 Mar 2018
Miransertib
EU/3/18/1997
Treatment of Proteus syndrome Active (positive) 21 Mar 2018
melatonin
EU/3/18/1996
23 clinical trials →
Treatment of neonatal encephalopathy Active (positive) 21 Mar 2018
Larotrectinib
EU/3/18/1995
9 clinical trials →
Treatment of salivary gland cancer Withdrawn 21 Mar 2018
Ivosidenib
EU/3/18/1994 · now authorised as Tibsovo
26 clinical trials →
Treatment of biliary tract cancer Active (positive) 21 Mar 2018
Gemfibrozil
EU/3/18/1993
Treatment of neuronal ceroid lipofuscinosis Active (positive) 21 Mar 2018
Docosahexaenoic acid ethyl ester
EU/3/18/1991
Treatment of sickle cell disease Active (positive) 21 Mar 2018
dimethyl fumarate
EU/3/18/1990
7 clinical trials →
Treatment of Friedreichโ€™s ataxia Active (positive) 21 Mar 2018
(2S,4R)-1-(2-(3-acetyl-5-(2-methylpyrimidine-5-yl)-1H-indazol-1-yl)acetyl)-N-(6-bromopyridine-2-yl)-4-fluoropyrrolidine-2-carboxamide
EU/3/18/1989
Treatment of C3 glomerulopathy Withdrawn 21 Mar 2018
melatonin
-
23 clinical trials →
Treatment of non-traumatic subarachnoid haemorrhage Negative 15 Mar 2018
melatonin
-
23 clinical trials →
Treatment of partial deep dermal and full-thickness burns Negative 13 Mar 2018
(R)-2-(5-cyano-2-(6-(methoxycarbonyl)-7-methyl-3-oxo-8-(3-(trifluoromethyl)phenyl)-2,3,5,8-tetrahydro-[1,2,4]triazolo[4,3-a]pyrimidine-5-yl)phenyl)-N,N,N-trimeโ€ฆ
EU/3/18/1988
Treatment of cystic fibrosis Active (positive) 22 Feb 2018
vocimagene amiretrorepvec
EU/3/18/1987
Treatment of glioma Active (positive) 22 Feb 2018

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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.