共 50 条
- [31] Good humanisation practices in the healthcare of patients with rare diseases in Pharmacy Services[J]. FARMACIA HOSPITALARIA, 2024, 48 (01) : T3 - T8Albira, Maria Jose Company论文数: 0 引用数: 0 h-index: 0机构: Hosp Gen Univ Castellon, Serv Farm, Castellon de La Plana, Spain Hosp Gen Univ Castellon, Serv Farm, Avgda Benicassim 128, Castellon De La Plana 12004, Spain Hosp Gen Univ Castellon, Serv Farm, Castellon de La Plana, SpainAndres, Jose Luis Poveda论文数: 0 引用数: 0 h-index: 0机构: Hosp Univ & Politecn La Fe, Serv Farm, Valencia, Spain Hosp Gen Univ Castellon, Serv Farm, Castellon de La Plana, SpainSolsonab, Maria Dolores Edo论文数: 0 引用数: 0 h-index: 0机构: Hosp Univ & Politecn La Fe, Serv Farm, Valencia, Spain Hosp Gen Univ Castellon, Serv Farm, Castellon de La Plana, Spain
- [32] Age at diagnosis in patients with chronic congenital endocrine conditions: a regional cohort study from a reference center for rare diseases[J]. ORPHANET JOURNAL OF RARE DISEASES, 2021, 16 (01)Kallali, Wafa论文数: 0 引用数: 0 h-index: 0机构: Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, FranceMessiaen, Claude论文数: 0 引用数: 0 h-index: 0机构: Banque Natl Donnees Malad Rares, DSH&D, AP HP, Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, FranceSaidi, Roumaisah论文数: 0 引用数: 0 h-index: 0机构: Banque Natl Donnees Malad Rares, DSH&D, AP HP, Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, FranceLessim, Soucounda论文数: 0 引用数: 0 h-index: 0机构: Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, FranceViaud, Magali论文数: 0 引用数: 0 h-index: 0机构: Necker Univ Hosp, AP HP, Pediat Endocrinol Gynecol & Diabetol Dept, F-75015 Paris, France Univ Paris, Pediat Endocrinol Gynecol & Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Necker Univ Hosp,AP HP, F-75015 Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, FranceDulon, Jerome论文数: 0 引用数: 0 h-index: 0机构: Sorbonne Univ, Endocrinol Dept, Reference Ctr Growth & Dev Endocrine Dis, La Pitie Salpetriere Univ Hosp,AP HP, F-75013 Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, FranceNedelcu, Mariana论文数: 0 引用数: 0 h-index: 0机构: Sorbonne Univ, Endocrinol Dept, Reference Ctr Growth & Dev Endocrine Dis, St Antoine Univ Hosp,AP HP, F-75012 Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, FranceSamara, Dinane论文数: 0 引用数: 0 h-index: 0机构: Necker Univ Hosp, AP HP, Pediat Endocrinol Gynecol & Diabetol Dept, F-75015 Paris, France Univ Paris, Pediat Endocrinol Gynecol & Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Necker Univ Hosp,AP HP, F-75015 Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, FranceHouang, Muriel论文数: 0 引用数: 0 h-index: 0机构: Sorbonne Univ, Pediat Endocrinol Unit, Reference Ctr Growth & Dev Endocrine Dis, Trousseau Univ Hosp,AP HP, F-75012 Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, FranceDonadille, Bruno论文数: 0 引用数: 0 h-index: 0机构: Sorbonne Univ, Endocrinol Dept, Reference Ctr Growth & Dev Endocrine Dis, St Antoine Univ Hosp,AP HP, F-75012 Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, FranceCourtillot, Carine论文数: 0 引用数: 0 h-index: 0机构: Sorbonne Univ, Endocrinol Dept, Reference Ctr Growth & Dev Endocrine Dis, La Pitie Salpetriere Univ Hosp,AP HP, F-75013 Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, Francede Filippo, GianPaolo论文数: 0 引用数: 0 h-index: 0机构: Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, FranceCarel, Jean-Claude论文数: 0 引用数: 0 h-index: 0机构: Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, FranceChristin-Maitre, Sophie论文数: 0 引用数: 0 h-index: 0机构: Sorbonne Univ, Endocrinol Dept, Reference Ctr Growth & Dev Endocrine Dis, St Antoine Univ Hosp,AP HP, F-75012 Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, FranceTouraine, Philippe论文数: 0 引用数: 0 h-index: 0机构: Sorbonne Univ, Endocrinol Dept, Reference Ctr Growth & Dev Endocrine Dis, La Pitie Salpetriere Univ Hosp,AP HP, F-75013 Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, FranceNetchine, Irene论文数: 0 引用数: 0 h-index: 0机构: Sorbonne Univ, Pediat Endocrinol Unit, Reference Ctr Growth & Dev Endocrine Dis, Trousseau Univ Hosp,AP HP, F-75012 Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, FrancePolak, Michel论文数: 0 引用数: 0 h-index: 0机构: Necker Univ Hosp, AP HP, Pediat Endocrinol Gynecol & Diabetol Dept, F-75015 Paris, France Univ Paris, Pediat Endocrinol Gynecol & Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Necker Univ Hosp,AP HP, F-75015 Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, FranceLeger, Juliane论文数: 0 引用数: 0 h-index: 0机构: Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, France Univ Paris, Pediat Endocrinol Diabetol Dept, Reference Ctr Growth & Dev Endocrine Dis, Robert Debre Univ Hosp,AP HP, 48 Bd Serurier, F-75019 Paris, France
- [33] HEALTH-RELATED QUALITY OF LIFE AND PHARMACOTHERAPY COSTS STUDY FOR PATIENTS WITH RARE ENDOCRINE DISEASES IN BULGARIA - A PILOT STUDY[J]. VALUE IN HEALTH, 2017, 20 (09) : A560 - A561Kamusheva, M.论文数: 0 引用数: 0 h-index: 0机构: Med Univ Sofia, Fac Pharm, Sofia, Bulgaria Med Univ Sofia, Fac Pharm, Sofia, BulgariaZaharieva, S.论文数: 0 引用数: 0 h-index: 0机构: Med Univ Sofia, Sofia, Bulgaria Med Univ Sofia, Fac Pharm, Sofia, BulgariaElenkova, A.论文数: 0 引用数: 0 h-index: 0机构: Med Univ Sofia, Sofia, Bulgaria Med Univ Sofia, Fac Pharm, Sofia, BulgariaDoneva, M.论文数: 0 引用数: 0 h-index: 0机构: Med Univ Sofia, Fac Pharm, Sofia, Bulgaria Med Univ Sofia, Fac Pharm, Sofia, BulgariaDimitrova, M.论文数: 0 引用数: 0 h-index: 0机构: Med Univ Sofia, Fac Pharm, Sofia, Bulgaria Med Univ Sofia, Fac Pharm, Sofia, BulgariaPetrova, G.论文数: 0 引用数: 0 h-index: 0机构: Med Univ Sofia, Fac Pharm, Sofia, Bulgaria Med Univ Sofia, Fac Pharm, Sofia, Bulgaria
- [34] Age at diagnosis in patients with chronic congenital endocrine conditions: a regional cohort study from a reference center for rare diseases[J]. Orphanet Journal of Rare Diseases, 16Wafa Kallali论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric EndocrinologyClaude Messiaen论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric EndocrinologyRoumaisah Saïdi论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric EndocrinologySoucounda Lessim论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric EndocrinologyMagali Viaud论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric EndocrinologyJerome Dulon论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric EndocrinologyMariana Nedelcu论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric EndocrinologyDinane Samara论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric EndocrinologyMuriel Houang论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric EndocrinologyBruno Donadille论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric EndocrinologyCarine Courtillot论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric EndocrinologyGianPaolo de Filippo论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric EndocrinologyJean-Claude Carel论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric EndocrinologySophie Christin-Maitre论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric EndocrinologyPhilippe Touraine论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric EndocrinologyIrene Netchine论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric EndocrinologyMichel Polak论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric EndocrinologyJuliane Léger论文数: 0 引用数: 0 h-index: 0机构: Assistance Publique-Hôpitaux de Paris,Pediatric Endocrinology
- [35] RD-MON - Building a Rare Disease Monitor to Enhance Awareness for Patients with Rare Diseases in Intensive Care[J]. CARING IS SHARING-EXPLOITING THE VALUE IN DATA FOR HEALTH AND INNOVATION-PROCEEDINGS OF MIE 2023, 2023, 302 : 358 - 359Blasini, Romina论文数: 0 引用数: 0 h-index: 0机构: Univ Giessen, Dept Med Informat, Giessen, Germany Univ Giessen, Dept Med Informat, Giessen, GermanyMichel-Backofen, Achim论文数: 0 引用数: 0 h-index: 0机构: Univ Hosp Giessen & Marburg, Dept Clin & Adm Data Proc, Site Giessen, Giessen, Germany Univ Giessen, Dept Med Informat, Giessen, GermanySchneider, Henning论文数: 0 引用数: 0 h-index: 0机构: Univ Giessen, Dept Med Informat, Giessen, Germany Univ Giessen, Dept Med Informat, Giessen, GermanyMarquardt, Kurt论文数: 0 引用数: 0 h-index: 0机构: Univ Hosp Giessen & Marburg, Dept Clin & Adm Data Proc, Site Giessen, Giessen, Germany Univ Giessen, Dept Med Informat, Giessen, Germany
- [36] China has officially released its first national list of rare diseases[J]. INTRACTABLE & RARE DISEASES RESEARCH, 2018, 7 (02) : 145 - 147He, Jiangjiang论文数: 0 引用数: 0 h-index: 0机构: Shanghai Med Informat Ctr, Shanghai Hlth Dev Res Ctr, Dept Hlth Policy Res, Shanghai, Peoples R China Fudan Univ, Sch Publ Hlth, Shanghai, Peoples R China Shanghai Med Informat Ctr, Shanghai Hlth Dev Res Ctr, Dept Hlth Policy Res, Shanghai, Peoples R ChinaKang, Qi论文数: 0 引用数: 0 h-index: 0机构: Shanghai Med Informat Ctr, Shanghai Hlth Dev Res Ctr, Dept Hlth Policy Res, Shanghai, Peoples R China Shanghai Med Informat Ctr, Shanghai Hlth Dev Res Ctr, Dept Hlth Policy Res, Shanghai, Peoples R ChinaHu, Jiahao论文数: 0 引用数: 0 h-index: 0机构: China Pharmaceut Univ, Sch Int Pharmaceut Business, Nanjing, Jiangsu, Peoples R China Shanghai Med Informat Ctr, Shanghai Hlth Dev Res Ctr, Dept Hlth Policy Res, Shanghai, Peoples R ChinaSong, Peipei论文数: 0 引用数: 0 h-index: 0机构: Shanghai Med Informat Ctr, Shanghai Hlth Dev Res Ctr, Dept Hlth Policy Res, Shanghai, Peoples R China Shanghai Med Informat Ctr, Shanghai Hlth Dev Res Ctr, Dept Hlth Policy Res, Shanghai, Peoples R ChinaJin, Chunlin论文数: 0 引用数: 0 h-index: 0机构: Shanghai Med Informat Ctr, Shanghai Hlth Dev Res Ctr, Dept Hlth Policy Res, Shanghai, Peoples R China Shanghai Med Informat Ctr, Shanghai Hlth Dev Res Ctr, Dept Hlth Policy Res, Shanghai, Peoples R China
- [37] Clinical practice guidelines: the first year of activity of the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET)[J]. RMD OPEN, 2018, 4Mosca, Marta论文数: 0 引用数: 0 h-index: 0机构: Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, Italy AOU Pisana, Rheumatol Unit, Pisa, Italy Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyCutolo, Maurizio论文数: 0 引用数: 0 h-index: 0机构: Univ Genoa, Res Lab, IRCCS San Martino Polyclin Hosp, Dept Internal Med, Genoa, Italy Univ Genoa, Acad Div Clin Rheumatol, IRCCS San Martino Polyclin Hosp, Dept Internal Med, Genoa, Italy Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyStefano, Bombardieri论文数: 0 引用数: 0 h-index: 0机构: Univ Pisa, Pisa, Italy Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyGerd, Burmester论文数: 0 引用数: 0 h-index: 0机构: Charite, Dept Rheumatol & Clin Immunol, Berlin, Germany Charite, Dept Rheumatol & Clin Immunol, Berlin, Germany Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyEurico, Fonseca Joao论文数: 0 引用数: 0 h-index: 0机构: Lisbon Acad Med Ctr, Hosp Santa Maria, Rheumatol Dept, Ctr Hosp Lisboa Norte, Lisbon, Portugal Lisbon Acad Med Ctr, Hosp Santa Maria, Rheumatol Dept, Ctr Hosp Lisboa Norte,Hosp Santa Maria, Lisbon, Portugal Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyCharissa, Frank论文数: 0 引用数: 0 h-index: 0机构: Bindweefsel Be, Koersel, Belgium Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyIlaria, Galetti论文数: 0 引用数: 0 h-index: 0机构: Federat European Scleroderma Assoc, FESCA, Milan, Italy Univ Lille, CHU Lille, LIRIC,Dept Med Interne, INSERM,Ctr Reference Malad Syst & Autoimmunes R, Lille, France Univ Lille, CHU Lille, LIRIC,Immunol Clin, INSERM,Ctr Reference Malad Syst & Autoimmunes R, Lille, France Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyEric, Hachulla论文数: 0 引用数: 0 h-index: 0机构: Univ Lille, CHU Lille, LIRIC,Dept Med Interne, INSERM,Ctr Reference Malad Syst & Autoimmunes R, Lille, France Univ Lille, CHU Lille, LIRIC,Immunol Clin, INSERM,Ctr Reference Malad Syst & Autoimmunes R, Lille, France Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyFrederic, Houssiau论文数: 0 引用数: 0 h-index: 0机构: Clin Univ St Luc, Serv Rhumatol, Brussels, Belgium Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyUlf, Mueller-Ladner论文数: 0 引用数: 0 h-index: 0机构: Justus Liebig Univ Giessen, Dept Rheumatol & Clin Immunol, Kerckhoff Klin, Bad Nauheim, Germany Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyMatthias, Schneider论文数: 0 引用数: 0 h-index: 0机构: Univ Klinikum Dusseldorf, Dept Rheumatol, Dusseldorf, Germany Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyVanessa, Smith论文数: 0 引用数: 0 h-index: 0机构: Univ Ghent, Dept Internal Med, Ghent Univ Hosp, Dept Rheumatol, Ghent, Belgium Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyJacob, van Laar论文数: 0 引用数: 0 h-index: 0机构: Univ Utrecht, Univ Med Ctr Utrecht, Dept Rheumatol & Clin Immunol, Utrecht, Netherlands Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyAna, Vieira论文数: 0 引用数: 0 h-index: 0机构: Nucleo Sindrome Sjogren, Liga Portuguesa Doencas Reumat, Lisbon, Portugal Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyZahir, Amoura论文数: 0 引用数: 0 h-index: 0机构: Hosp Pitie Salpetriere, AP HP, Dept Internal Med, Paris, France Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyTadej, Avcin论文数: 0 引用数: 0 h-index: 0机构: Univ Med Ctr Ljubljana, Univ Childrens Hosp, Dept Allergol Rheumatol & Clin Immunol, Ljubljana, Slovenia Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyLorenzo, Beretta论文数: 0 引用数: 0 h-index: 0机构: Fdn IRCCS Ca Granda Osped Maggiore Policlin Milan, Referral Ctr Syst Autoimmune Dis, Milan, Italy Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyGerd, Burmester论文数: 0 引用数: 0 h-index: 0机构: Charite, Dept Rheumatol & Clin Immunol, Berlin, Germany Charite, Dept Rheumatol & Clin Immunol, Berlin, Germany Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyMaurizio, Cutolo论文数: 0 引用数: 0 h-index: 0机构: Univ Genoa, Res Lab, IRCCS Polyclin Hosp San Martino, Dept Internal Med, Genoa, Italy Univ Genoa, Acad Div Clin Rheumatol, IRCCS Polyclin Hosp San Martino, Dept Internal Med, Genoa, Italy Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyJeska, de Vries-Bouwstra K.论文数: 0 引用数: 0 h-index: 0机构: Leiden Univ, Med Ctr, Dept Rheumatol, Leiden, Netherlands Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyAndrea, Doria论文数: 0 引用数: 0 h-index: 0机构: AO Padova, Dept Med, Rheumatol Unit, Padua, Italy Univ Padua, Padua, Italy Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyAlessandro, Ferraris论文数: 0 引用数: 0 h-index: 0机构: Sapienza Univ, San Camillo Forlanini Hosp, Mol Med Dept, Med Genet Lab, Rome, Italy Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyThomas, Krieg论文数: 0 引用数: 0 h-index: 0机构: Univ Klinikum Koln, Dept Dermatol, Cologne, Germany Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyFransiska, Malfait论文数: 0 引用数: 0 h-index: 0机构: Ghent Univ Hosp, Ctr Med Genet, Ghent, Belgium Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, Italy论文数: 引用数: h-index:机构:Marco, Matucci Cerinic论文数: 0 引用数: 0 h-index: 0机构: Univ Florence, Div Rheumatol, Dept Clin & Expt Med, AOU Careggi, Florence, Italy Univ Florence, AOU Careggi, Scleroderma Unit, Florence, Italy Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyCarlomaurizio, Montecucco论文数: 0 引用数: 0 h-index: 0机构: Univ & IRCCS Policlin S Matteo Fdn, Div Rheumatol, Pavia, Italy Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyMaria, Moraes-Fontes Francisca论文数: 0 引用数: 0 h-index: 0机构: Ctr Hosp Lisboa Cent, Hosp Curry Cabral, Unidade Doencas Autoimunes Med 7 2, Lisbon, Portugal Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyMarta, Mosca论文数: 0 引用数: 0 h-index: 0机构: Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyLuc, Mouthon论文数: 0 引用数: 0 h-index: 0机构: Univ Paris 05, Hop Cochin, AP HP, Serv Med Interne,Ctr Reference Malad Syst Autoimm, Paris, France Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalySimona, Rednic论文数: 0 引用数: 0 h-index: 0机构: Emergency Cty Teaching Hosp, Dept Rheumatol, Cluj Napoca, Romania Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyAngela, Tincani论文数: 0 引用数: 0 h-index: 0机构: Civil Hosp, Rheumatol & Clin Immunol Unit, Brescia, Italy Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyVan Hagen, P. M.论文数: 0 引用数: 0 h-index: 0机构: Erasmus MC, Dept Internal Med & Immunol, Rotterdam, Netherlands Univ Utrecht, Univ Med Ctr Utrecht, Dept Rheumatol & Clin Immunol, Utrecht, Netherlands Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyMartina, Basile论文数: 0 引用数: 0 h-index: 0机构: Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyAlain, Cornet论文数: 0 引用数: 0 h-index: 0机构: Lupus Europe, Brussels, Belgium Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyVera, Guimaraes论文数: 0 引用数: 0 h-index: 0机构: Liga Portuguesa Doencas Reumat, Lisbon, Portugal Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyJuergen, Grunert论文数: 0 引用数: 0 h-index: 0机构: Deutsch Ehlers Danlos Initiat eV, Furth, Germany Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyLisa, Matthews论文数: 0 引用数: 0 h-index: 0机构: Relapsing Polychondritis Awareness & Support, Worcester, England Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, ItalyAna, Vieira论文数: 0 引用数: 0 h-index: 0机构: Nucleo Sindrome Sjogren, Liga Portuguesa Doencas Reumat, Lisbon, Portugal Univ Pisa, Rheumatol Unit, AOU Pisana, Pisa, Italy
- [38] Recommendations for optimal interdisciplinary management and healthcare settings for patients with rare neurological diseases[J]. ORPHANET JOURNAL OF RARE DISEASES, 2024, 19 (01)Graessner, Holm论文数: 0 引用数: 0 h-index: 0机构: Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, Germany Univ Hosp Tubingen, Ctr Rare Dis, Tubingen, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyReinhard, Carola论文数: 0 引用数: 0 h-index: 0机构: Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, Germany Univ Hosp Tubingen, Ctr Rare Dis, Tubingen, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyBaeumer, Tobias论文数: 0 引用数: 0 h-index: 0机构: Univ Lubeck, Inst Syst Motor Sci, Lubeck, Germany Univ Lubeck, Ctr Rare Dis, Schleswig Holstein, Germany Univ Hosp Med Ctr, Schleswig Holstein, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyBaumgaertner, Annette论文数: 0 引用数: 0 h-index: 0机构: Univ Lubeck, Inst Hlth Sci, Lubeck, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyBrockmann, Knut论文数: 0 引用数: 0 h-index: 0机构: Univ Med Ctr, Interdisciplinary Pediat Ctr Children Dev Disabil, Dept Pediat & Adolescent Med, Gottingen, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyBrueggemann, Norbert论文数: 0 引用数: 0 h-index: 0机构: Univ Lubeck, Ctr Rare Dis, Schleswig Holstein, Germany Univ Hosp Med Ctr, Schleswig Holstein, Germany Univ Hosp Med Ctr Schleswig Holstein, Dept Neurol, Schleswig Holstein, Germany Univ Lubeck, Inst Neurogenet, Lubeck, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyBueltmann, Eva论文数: 0 引用数: 0 h-index: 0机构: Hannover Med Sch, Inst Diagnost & Intervent Neuroradiol, Carl Neuberg Str 1, D-30625 Hannover, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyErdmann, Jeanette论文数: 0 引用数: 0 h-index: 0机构: DZHK German Res Ctr Cardiovasc Res, Partner Site Hamburg Lubeck Kiel, Inst Cardiogenet, Lubeck, Germany Univ Heart Ctr Lubeck, Lubeck, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyHeise, Kirstin论文数: 0 引用数: 0 h-index: 0机构: Med Univ South Carolina, Dept Hlth Sci & Res, Charleston, SC USA Katholieke Univ Leuven, Dept Movement Sci, Motor Control & Neural Plast Res Grp, Leuven, Belgium Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyHoeglinger, Guenter论文数: 0 引用数: 0 h-index: 0机构: Hannover Med Sch, Dept Neurol, Carl Neuberg Str 1, D-30625 Hannover, Germany Ludwig Maximilians Univ Munchen, Dept Neurol, Marchioninistr 15, D-81377 Munich, Germany German Ctr Neurodegenerat Dis DZNE, Feodor Lynen Str 17, D-81377 Munich, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyHuening, Irina论文数: 0 引用数: 0 h-index: 0机构: Univ Lubeck, Inst Human Genet, Lubeck, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyKaiser, Frank J.论文数: 0 引用数: 0 h-index: 0机构: Univ Hosp Essen, EZSE, Essen, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyKlein, Christine论文数: 0 引用数: 0 h-index: 0机构: Univ Hosp Med Ctr, Schleswig Holstein, Germany Univ Lubeck, Inst Neurogenet, Schleswig Holstein, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyKlopstock, Thomas论文数: 0 引用数: 0 h-index: 0机构: Univ Hosp, LMU, Friedrich Baur Inst, Dept Neurol, Munich, Germany Munich Cluster Syst Neurol SyNergy, Munich, Germany German Ctr Neurodegenerat Dis DZNE, Munich, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyKraegeloh-Mann, Ingeborg论文数: 0 引用数: 0 h-index: 0机构: Univ Tubingen, Dept Pediat & Dev Neurol, Social Pediat, Tubingen, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyKraemer, Markus论文数: 0 引用数: 0 h-index: 0机构: Alfried Krupp Hosp Essen, Dept Neurol, Essen, Germany Heinrich Heine Univ, Med Fac, Dept Neurol, Dusseldorf, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyLuedtke, Kerstin论文数: 0 引用数: 0 h-index: 0机构: Univ Lubeck, Inst Hlth Sci, Dept Physiotherapy, Lubeck, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyMuecke, Martin论文数: 0 引用数: 0 h-index: 0机构: Rhein Westfal TH Aachen, Inst Digitalizat & Gen Med, Pauwelsstr 30, D-52074 Aachen, Germany Rhein Westfal TH Aachen, Ctr Rare Dis Aachen ZSEA, Pauwelsstr 30, D-52074 Aachen, Germany Rhein Westfal TH Aachen, Dept Neurol, Pauwelsstr 30, D-52074 Aachen, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyMusacchio, Thomas论文数: 0 引用数: 0 h-index: 0机构: Univ Hosp Wurzburg, Dept Neurol, Josef Schneider Str 11, D-97080 Wurzburg, Germany Univ Hosp Wurzburg, Ctr Rare Blood Cell Disorders, Josef Schneider Str 2, D-97080 Wurzburg, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyNadke, Andreas论文数: 0 引用数: 0 h-index: 0机构: Deutsch Heredo Ataxie Gesell EV, Stuttgart, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyOsmanovic, Alma论文数: 0 引用数: 0 h-index: 0机构: Univ Hosp Essen, EZSE, Essen, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyRitter, Gabriele论文数: 0 引用数: 0 h-index: 0机构: Klinikum Ameos, Evangel Krankenhausseelsorge, Heiligenhafen Friedrich Ebertstr 100 Huntington Ze, D-23774 Heiligenhafen, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyRoese, Katharina论文数: 0 引用数: 0 h-index: 0机构: Univ Lubeck, Inst Hlth Sci, Lubeck, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanySchippers, Christopher论文数: 0 引用数: 0 h-index: 0机构: Univ Hosp Aachen, Ctr Rare Dis Aachen ZSEA, Aachen, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanySchoels, Ludger论文数: 0 引用数: 0 h-index: 0机构: Univ Hosp Tubingen, Ctr Rare Dis, Tubingen, Germany Univ Tubingen, Dept Neurol, Tubingen, Germany Univ Tubingen, Hertie Inst Clin Brain Res, Tubingen, Germany German Ctr Neurodegenerat Dis DZNE, Tubingen, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanySchuele, Rebecca论文数: 0 引用数: 0 h-index: 0机构: Univ Tubingen, Hertie Inst Clin Brain Res, Tubingen, Germany Heidelberg Univ Hosp, Dept Neurol, Div Neurodegenerat Dis, Heidelberg, Germany Fac Med, Heidelberg, Germany Univ Tubingen, Ctr Neurol, Tubingen, Germany German Ctr Neurodegenerat Dis DZNE, Tubingen, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanySchulz, Jorg B.论文数: 0 引用数: 0 h-index: 0机构: Rhein Westfal TH Aachen, Univ Hosp, Dept Neurol, Aachen, Germany Univ Hosp RWTH Aachen, Ctr Rare Dis, Aachen, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanySpross, Joachim论文数: 0 引用数: 0 h-index: 0机构: Deutsch Gesell Muskelkranke eV, Moos 4, D-79112 Freiburg, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyStasch, Eveline论文数: 0 引用数: 0 h-index: 0机构: Deutsche PSP Gesellsch eV, Weingartenstr 28a, D-61231 Bad Nauheim, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyWunderlich, Gilbert论文数: 0 引用数: 0 h-index: 0机构: Univ Cologne, Fac Med, Cologne, Germany Univ Cologne, Univ Hosp, Dept Neurol, Cologne, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, GermanyMuenchau, Alexander论文数: 0 引用数: 0 h-index: 0机构: Univ Lubeck, Inst Syst Motor Sci, Lubeck, Germany Univ Lubeck, Ctr Rare Dis, Schleswig Holstein, Germany Univ Hosp Med Ctr, Schleswig Holstein, Germany Univ Tubingen, Inst Med Genet & Appl Genom, Tubingen, Germany
- [39] Presence of good humanization practices in the healthcare of patients with rare diseases in Pharmacy Services[J]. FARMACIA HOSPITALARIA, 2024, 48 (01) : 3 - 8Albir, Maria Jose Company论文数: 0 引用数: 0 h-index: 0机构: Hosp Gen Univ Castellon, Serv Farm, Castellon de La Plana, Spain Hosp Gen Univ Castellon, Serv Farm, Castellon de La Plana, SpainAndres, Jose Luis Poveda论文数: 0 引用数: 0 h-index: 0机构: Hosp Univ & Politecn La Fe, Serv Farm, Valencia, Spain Hosp Gen Univ Castellon, Serv Farm, Castellon de La Plana, SpainSolsona, Maria Dolores Edo论文数: 0 引用数: 0 h-index: 0机构: Hosp Univ & Politecn La Fe, Serv Farm, Valencia, Spain Hosp Gen Univ Castellon, Serv Farm, Castellon de La Plana, Spain
- [40] Recommendations for optimal interdisciplinary management and healthcare settings for patients with rare neurological diseases[J]. Orphanet Journal of Rare Diseases, 19Holm Graessner论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsCarola Reinhard论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsTobias Bäumer论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsAnnette Baumgärtner论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsKnut Brockmann论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsNorbert Brüggemann论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsEva Bültmann论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsJeanette Erdmann论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsKirstin Heise论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsGünter Höglinger论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsIrina Hüning论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsFrank J. Kaiser论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsChristine Klein论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsThomas Klopstock论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsIngeborg Krägeloh-Mann论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsMarkus Kraemer论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsKerstin Luedtke论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsMartin Mücke论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsThomas Musacchio论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsAndreas Nadke论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsAlma Osmanovic论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsGabriele Ritter论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsKatharina Röse论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsChristopher Schippers论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsLudger Schöls论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsRebecca Schüle论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsJörg B. Schulz论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsJoachim Sproß论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsEveline Stasch论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsGilbert Wunderlich论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied GenomicsAlexander Münchau论文数: 0 引用数: 0 h-index: 0机构: University of Tübingen,Institute for Medical Genetics and Applied Genomics