共 50 条
- [1] The experience of diagnosis announcement in rare endocrine diseases: A survey of the French FIRENDO network[J]. ANNALES D ENDOCRINOLOGIE, 2024, 85 (01) : 27 - 35Rahabi, Haifa论文数: 0 引用数: 0 h-index: 0机构: Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceGivony, Maria论文数: 0 引用数: 0 h-index: 0机构: Grp Hosp Univ AP HP Ctr, Hop Cochin, AP HP, Filiere Sante Malad Rares Endocriniennes FIRENDO,S, F-75014 Paris, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceDemareth, Beatrice论文数: 0 引用数: 0 h-index: 0机构: Assoc GRANDIR, F-92600 Asnieres, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceAubron, Marie-Reine论文数: 0 引用数: 0 h-index: 0机构: Assoc Craniopharyngiome Solidar, F-65000 Tarbes, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceAlbarela, Frederique论文数: 0 引用数: 0 h-index: 0机构: Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceAubrond, Marie -Reine论文数: 0 引用数: 0 h-index: 0机构: Assoc Craniopharyngiome Solidar, F-65000 Tarbes, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceBartes, Beate论文数: 0 引用数: 0 h-index: 0机构: Assoc Vivre Sans Thyroide, F-31490 Leguevin, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceBernard, Lucie论文数: 0 引用数: 0 h-index: 0机构: MAIA Assoc Aider Toutes Personnes Confrontees Infe, F-61140 Bagnoles De Lorne, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceAbdoul, Hendy论文数: 0 引用数: 0 h-index: 0机构: Hop Tarnier, URC Paris Descartes Necker Cochin, F-75006 Paris, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceBouazza, Naim论文数: 0 引用数: 0 h-index: 0机构: Hop Tarnier, URC Paris Descartes Necker Cochin, F-75006 Paris, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceBrun, Philippe论文数: 0 引用数: 0 h-index: 0机构: Assoc ASSYMCAL Syndrome Mc Cune Albright Dysplasie, F-85000 La Roche Sur Yon, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceDrui, Delphine论文数: 0 引用数: 0 h-index: 0机构: Ctr Hosp Univ Nantes, Inst Thorax, Serv Endocrinol, Blvd Jacques Monod, F-44093 Nantes, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceDujardin, Veronique论文数: 0 引用数: 0 h-index: 0机构: Valentin APAC Assoc Porteurs Anomalies Chromos, F-95610 Eragny Sur Oise, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceLancon, Catherine论文数: 0 引用数: 0 h-index: 0机构: Assoc Natl Acromegalie Reconnue Interet Gen, Acromegales Pas Seulement, F-59234 Villers Au Tertre, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceMalivoir, Sabine论文数: 0 引用数: 0 h-index: 0机构: Hop Armand Trousseau, AP HP, F-75571 Paris, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceNetchine, Irene论文数: 0 引用数: 0 h-index: 0机构: Hop Armand Trousseau, AP HP, F-75571 Paris, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FrancePerrotin, Benedicte论文数: 0 引用数: 0 h-index: 0机构: AFIF SSR PAG Assoc Francaise Familles Touchees Syn, F-30390 Domazan, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FrancePicard, Virginie论文数: 0 引用数: 0 h-index: 0机构: Assoc Syndrome Wolfram, F-56390 Grand Champ, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceReynaud, Rachel论文数: 0 引用数: 0 h-index: 0机构: Hop la Timone Enfants, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Pediat Multidisciplinaire, F-13005 Marseille, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceRibeiro, Murielle论文数: 0 引用数: 0 h-index: 0机构: Ctr Hosp Univ Angers, Plateforme PRIOR, F-49000 Angers, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceGuidollet, Veronique Tardy论文数: 0 引用数: 0 h-index: 0机构: Hosp Civils Lyon HCL, Ctr Reference DEV GEN, Lab Biol Med multis, F-69677 Bron, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceVictor, Amelie论文数: 0 引用数: 0 h-index: 0机构: Assoc Syndrome Rokitansky MRKH, F-75013 Paris, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceBertherat, Jerome论文数: 0 引用数: 0 h-index: 0机构: Grp Hosp Univ AP HP Ctr, Hop Cochin, AP HP, Filiere Sante Malad Rares Endocriniennes FIRENDO,S, F-75014 Paris, France Ctr Reference Malad Rares Surrenale, Serv Endocrinol, Paris 75014, France Univ Paris Cite, Grp Hosp Univ AP HP Ctr, AP HP, Inserm U1016,CNRS UMR 8104,Inst Cochin,Hop Cochin, Paris, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceColin, Claudine论文数: 0 引用数: 0 h-index: 0机构: Assoc Surrenales, F-35200 Rennes, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, FranceBrue, Thierry论文数: 0 引用数: 0 h-index: 0机构: Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, France Aix Marseille Univ, Inst Natl Sante & Rech Med Inserm, Inst Marseille Malad Rares MarMaRa, U1251, Marseille, France Hop Conception, Dept Endocrinol, 147 Blvd Baille, F-13005 Marseille, France Hop Conception, AP HM, Ctr Reference Malad Rares Hypophyse HYPO, Serv Endocrinol, F-13005 Marseille, France
- [2] Patient journey experiences may contribute to improve healthcare for patients with rare endocrine diseases[J]. ENDOCRINE CONNECTIONS, 2022, 11 (12)Webb, Susan M.论文数: 0 引用数: 0 h-index: 0机构: IIB St Pau, Res Ctr Pituitary Dis, Barcelona, Spain ISCIII, Ctr Invest Biomed Red Enfermedades Raras CIBERER, Unidad 747, Madrid, Spain Hosp Santa Creu & Sant Pau, Dept Endocrinol, Barcelona, Spain Univ Autonoma Barcelona UAB, Dept Med, Barcelona, Spain IIB St Pau, Res Ctr Pituitary Dis, Barcelona, SpainKristensen, Jette论文数: 0 引用数: 0 h-index: 0机构: ePAG, Aarhus, Denmark Chair Danish Addison Patient Assoc, Aarhus, Denmark IIB St Pau, Res Ctr Pituitary Dis, Barcelona, SpainNordenstrom, Anna论文数: 0 引用数: 0 h-index: 0机构: Karolinska Univ Hosp, Astrid Lindgren Childrens Hosp, Pediat Endocrinol, Stockholm, Sweden IIB St Pau, Res Ctr Pituitary Dis, Barcelona, SpainVitali, Diana论文数: 0 引用数: 0 h-index: 0机构: ePAG, Rome, Italy Chair SOD ITALIA Italian Patients Org Septo Opt D, Rome, Italy IIB St Pau, Res Ctr Pituitary Dis, Barcelona, SpainAmodru, Vincent论文数: 0 引用数: 0 h-index: 0机构: Aix Marseille Univ, Inst Natl Sante & Rech Med INSERM, Inst MarMaRa, U1251,Marseille Med Genet, Marseille, France IIB St Pau, Res Ctr Pituitary Dis, Barcelona, SpainWiehe, Lenja Katharina论文数: 0 引用数: 0 h-index: 0机构: EURORDIS Rare Dis Europe, Paris, France IIB St Pau, Res Ctr Pituitary Dis, Barcelona, SpainBolz-Johnson, Matt论文数: 0 引用数: 0 h-index: 0机构: EURORDIS Rare Dis Europe, Paris, France IIB St Pau, Res Ctr Pituitary Dis, Barcelona, Spain
- [3] Rare, but important: Endocrine Diseases that every Intern must know[J]. INTERNIST, 2013, 54 (10): : 1169 - 1170Reincke, M.论文数: 0 引用数: 0 h-index: 0机构: Klinikum Univ Munchen, Med Klin & Poliklin 4, D-80336 Munich, Germany Klinikum Univ Munchen, Med Klin & Poliklin 4, D-80336 Munich, Germany
- [4] PERSPECTIVES ON THE IMPACT OF ROMANIAN PATIENT ORGANIZATIONS IN RARE ENDOCRINE DISEASES[J]. ROMANIAN JOURNAL OF LEGAL MEDICINE, 2020, 28 (04): : 458 - 464Blidaru, Teodor Cristian论文数: 0 引用数: 0 h-index: 0机构: Carol Davila Univ Med & Pharm, 37 Dionisie Lupu St,Dist 2, Bucharest 020021, Romania Carol Davila Univ Med & Pharm, 37 Dionisie Lupu St,Dist 2, Bucharest 020021, RomaniaPaun, Diana Loreta论文数: 0 引用数: 0 h-index: 0机构: Carol Davila Univ Med & Pharm, 37 Dionisie Lupu St,Dist 2, Bucharest 020021, Romania CI Parhon Natl Inst Endocrinol, Bucharest, Romania Carol Davila Univ Med & Pharm, 37 Dionisie Lupu St,Dist 2, Bucharest 020021, RomaniaSirbu, Alexandru Constantin论文数: 0 引用数: 0 h-index: 0机构: Iuliu Hatieganu Univ Med & Pharm, Cluj Napoca, Romania Carol Davila Univ Med & Pharm, 37 Dionisie Lupu St,Dist 2, Bucharest 020021, RomaniaDima, Natalia Ioana论文数: 0 引用数: 0 h-index: 0机构: Carol Davila Univ Med & Pharm, 37 Dionisie Lupu St,Dist 2, Bucharest 020021, Romania Carol Davila Univ Med & Pharm, 37 Dionisie Lupu St,Dist 2, Bucharest 020021, RomaniaPoiana, Catalina论文数: 0 引用数: 0 h-index: 0机构: Carol Davila Univ Med & Pharm, 37 Dionisie Lupu St,Dist 2, Bucharest 020021, Romania CI Parhon Natl Inst Endocrinol, Bucharest, Romania Carol Davila Univ Med & Pharm, 37 Dionisie Lupu St,Dist 2, Bucharest 020021, Romania
- [5] Evaluation of the first year of growth hormone treatment in Prader-Willi Syndrome Patients followed at an Expert Center of Rare Endocrine Diseases[J]. HORMONE RESEARCH IN PAEDIATRICS, 2022, 95 (SUPPL 2): : 514 - 514Yordanova, Nikolinka论文数: 0 引用数: 0 h-index: 0机构: Med Univ, Dept Pediat, Varna, Bulgaria Med Univ, Dept Pediat, Varna, BulgariaBazdarska, Yuliya论文数: 0 引用数: 0 h-index: 0机构: Med Univ, Dept Pediat, Varna, Bulgaria Med Univ, Dept Pediat, Varna, BulgariaShishkov, Savi论文数: 0 引用数: 0 h-index: 0机构: IInd Dept Internal Med, Varna, Bulgaria Med Univ, Dept Pediat, Varna, BulgariaHalvadzhiyan, Irina论文数: 0 引用数: 0 h-index: 0机构: Med Univ, Dept Pediat, Pleven, Bulgaria UMHAT G Stranski, Pleven, Bulgaria Med Univ, Dept Pediat, Varna, BulgariaGalcheva, Sonya论文数: 0 引用数: 0 h-index: 0机构: Med Univ, Dept Pediat, Varna, Bulgaria Med Univ, Dept Pediat, Varna, BulgariaIotova, Violeta论文数: 0 引用数: 0 h-index: 0机构: Med Univ, Dept Pediat, Varna, Bulgaria Med Univ, Dept Pediat, Varna, Bulgaria
- [6] FIMARAD: The French rare skin diseases network[J]. ANNALES DE DERMATOLOGIE ET DE VENEREOLOGIE, 2018, 145 (8-9): : 544 - 547Bodemer, C.论文数: 0 引用数: 0 h-index: 0机构: Hop Necker Enfants Malad, AP HP, Malad Cutanees & Muqueuses Origine Genet, Ctr Reference MAGEC,Serv Dermatol,Filiere FIMARAD, 149 Rue Sevres, F-75015 Paris, France Hop Necker Enfants Malad, AP HP, FIMARAD, 149 Rue Sevres, F-75015 Paris, France Hop Necker Enfants Malad, AP HP, Malad Cutanees & Muqueuses Origine Genet, Ctr Reference MAGEC,Serv Dermatol,Filiere FIMARAD, 149 Rue Sevres, F-75015 Paris, FranceTaieb, C.论文数: 0 引用数: 0 h-index: 0机构: Hop Necker Enfants Malad, AP HP, FIMARAD, 149 Rue Sevres, F-75015 Paris, France Hop Necker Enfants Malad, AP HP, Malad Cutanees & Muqueuses Origine Genet, Ctr Reference MAGEC,Serv Dermatol,Filiere FIMARAD, 149 Rue Sevres, F-75015 Paris, FranceVidaud, D.论文数: 0 引用数: 0 h-index: 0机构: Hop Necker Enfants Malad, AP HP, FIMARAD, 149 Rue Sevres, F-75015 Paris, France CHU Paris Ctr, Hop Cochin, AP HP, Serv Genet & Biol Mol, 27 Rue Faubourg St Jacques, F-75014 Paris, France Hop Necker Enfants Malad, AP HP, Malad Cutanees & Muqueuses Origine Genet, Ctr Reference MAGEC,Serv Dermatol,Filiere FIMARAD, 149 Rue Sevres, F-75015 Paris, FranceIngen-Housz-Orob, S.论文数: 0 引用数: 0 h-index: 0机构: Hop Necker Enfants Malad, AP HP, FIMARAD, 149 Rue Sevres, F-75015 Paris, France Hop Henri Mondor, AP HP,Serv Dermatol, Ctr Competence Malad Bulleuses Autoimmunes MALIB, Ctr Reference Dermatoses Bulleuses Tox & Toxiderm, 51 Ave Marechal de Lattre de Tassigny, F-94000 Creteil, France Hop Necker Enfants Malad, AP HP, Malad Cutanees & Muqueuses Origine Genet, Ctr Reference MAGEC,Serv Dermatol,Filiere FIMARAD, 149 Rue Sevres, F-75015 Paris, FranceGene, R.论文数: 0 引用数: 0 h-index: 0机构: Hop Necker Enfants Malad, AP HP, FIMARAD, 149 Rue Sevres, F-75015 Paris, France Hop Necker Enfants Malad, AP HP, Malad Cutanees & Muqueuses Origine Genet, Ctr Reference MAGEC,Serv Dermatol,Filiere FIMARAD, 149 Rue Sevres, F-75015 Paris, France
- [7] THE NATIONAL RECORD OF RARE DISEASES IN THE CONTEXT OF THE REGIONAL NETWORK OF RARE DISEASES OF FRIULLI-VENEZIA GIULIA[J]. EPIDEMIOLOGIA & PREVENZIONE, 2011, 35 (5-6): : 196 - 196Deroma, L.论文数: 0 引用数: 0 h-index: 0机构: Azienda Osped Univ Santa Maria Misericordia, Ctr Coordinamento Reg Malattie Rare, Udine, Italy Azienda Osped Univ Santa Maria Misericordia, Ctr Coordinamento Reg Malattie Rare, Udine, ItalySechi, A.论文数: 0 引用数: 0 h-index: 0机构: Azienda Osped Univ Santa Maria Misericordia, Ctr Coordinamento Reg Malattie Rare, Udine, Italy Azienda Osped Univ Santa Maria Misericordia, Ctr Coordinamento Reg Malattie Rare, Udine, ItalyMacor, D.论文数: 0 引用数: 0 h-index: 0机构: Azienda Osped Univ Santa Maria Misericordia, Ctr Coordinamento Reg Malattie Rare, Udine, Italy Azienda Osped Univ Santa Maria Misericordia, Ctr Coordinamento Reg Malattie Rare, Udine, ItalyLiva, G.论文数: 0 引用数: 0 h-index: 0机构: Azienda Osped Univ Santa Maria Misericordia, Ctr Coordinamento Reg Malattie Rare, Udine, Italy Azienda Osped Univ Santa Maria Misericordia, Ctr Coordinamento Reg Malattie Rare, Udine, ItalyDardis, A.论文数: 0 引用数: 0 h-index: 0机构: Azienda Osped Univ Santa Maria Misericordia, Ctr Coordinamento Reg Malattie Rare, Udine, Italy Azienda Osped Univ Santa Maria Misericordia, Ctr Coordinamento Reg Malattie Rare, Udine, ItalyBembi, B.论文数: 0 引用数: 0 h-index: 0机构: Azienda Osped Univ Santa Maria Misericordia, Ctr Coordinamento Reg Malattie Rare, Udine, Italy Azienda Osped Univ Santa Maria Misericordia, Ctr Coordinamento Reg Malattie Rare, Udine, Italy
- [8] A first description of the Colombian national registry for rare diseases[J]. BMC Research Notes, 10 (1)Mateus H.E.论文数: 0 引用数: 0 h-index: 0机构: Center for Research in Genetics and Genomics-CIGGUR, GENIUROS Research Group, School of Medicine and Health Sciences, Universidad Del Rosario, Carrera 24 No. 63C-69, Bogotá Center for Research in Genetics and Genomics-CIGGUR, GENIUROS Research Group, School of Medicine and Health Sciences, Universidad Del Rosario, Carrera 24 No. 63C-69, BogotáPérez A.M.论文数: 0 引用数: 0 h-index: 0机构: Center for Research in Genetics and Genomics-CIGGUR, GENIUROS Research Group, School of Medicine and Health Sciences, Universidad Del Rosario, Carrera 24 No. 63C-69, Bogotá Center for Research in Genetics and Genomics-CIGGUR, GENIUROS Research Group, School of Medicine and Health Sciences, Universidad Del Rosario, Carrera 24 No. 63C-69, BogotáMesa M.L.论文数: 0 引用数: 0 h-index: 0机构: Ministerio de Salud y Protección Social, Bogotá Center for Research in Genetics and Genomics-CIGGUR, GENIUROS Research Group, School of Medicine and Health Sciences, Universidad Del Rosario, Carrera 24 No. 63C-69, BogotáEscobar G.论文数: 0 引用数: 0 h-index: 0机构: Ministerio de Salud y Protección Social, Bogotá Center for Research in Genetics and Genomics-CIGGUR, GENIUROS Research Group, School of Medicine and Health Sciences, Universidad Del Rosario, Carrera 24 No. 63C-69, BogotáGálvez J.M.论文数: 0 引用数: 0 h-index: 0机构: Center for Research in Genetics and Genomics-CIGGUR, GENIUROS Research Group, School of Medicine and Health Sciences, Universidad Del Rosario, Carrera 24 No. 63C-69, Bogotá Center for Research in Genetics and Genomics-CIGGUR, GENIUROS Research Group, School of Medicine and Health Sciences, Universidad Del Rosario, Carrera 24 No. 63C-69, BogotáMontaño J.I.论文数: 0 引用数: 0 h-index: 0机构: Ministerio de Salud y Protección Social, Bogotá Center for Research in Genetics and Genomics-CIGGUR, GENIUROS Research Group, School of Medicine and Health Sciences, Universidad Del Rosario, Carrera 24 No. 63C-69, BogotáOspina M.L.论文数: 0 引用数: 0 h-index: 0机构: Instituto Nacional de Salud, Bogotá Center for Research in Genetics and Genomics-CIGGUR, GENIUROS Research Group, School of Medicine and Health Sciences, Universidad Del Rosario, Carrera 24 No. 63C-69, BogotáLaissue P.论文数: 0 引用数: 0 h-index: 0机构: Center for Research in Genetics and Genomics-CIGGUR, GENIUROS Research Group, School of Medicine and Health Sciences, Universidad Del Rosario, Carrera 24 No. 63C-69, Bogotá Center for Research in Genetics and Genomics-CIGGUR, GENIUROS Research Group, School of Medicine and Health Sciences, Universidad Del Rosario, Carrera 24 No. 63C-69, Bogotá
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