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1دورية أكاديمية
المؤلفون: Priego Zurita, Ana LuisaAff1, IDs00223024012567_cor1, Boarini, Manila, Casareto, Lorena, Cherenko, Mariya, Mordenti, Marina, Moroni, AliceAff2, IDs00223024012567_cor6, Ahmed, S. FaisalAff1, Aff3, Appelman-Dijkstra, Natasha M., Sangiorgi, Luca
المصدر: Calcified Tissue International: and Musculoskeletal Research. :1-9
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2دورية أكاديمية
المؤلفون: Jones, JenniferAff1, Aff2, IDs13023024030815_cor1, Cruddas, Marie, Simpson, Amy, Meade, Nick, Pushparajah, Daphnee, Peter, Michelle, Hunter, Amy
المصدر: Orphanet Journal of Rare Diseases. 19(1)
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3دورية أكاديمية
المؤلفون: Jennifer Jones, Marie Cruddas, Amy Simpson, Nick Meade, Daphnee Pushparajah, Michelle Peter, Amy Hunter
المصدر: Orphanet Journal of Rare Diseases, Vol 19, Iss 1, Pp 1-16 (2024)
مصطلحات موضوعية: Rare conditions, Patient experience, Overall care, Exploratory analysis, Medicine
وصف الملف: electronic resource
Relation: https://doaj.org/toc/1750-1172
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4دورية أكاديمية
المؤلفون: Robert Sarkany, Jessica Walburn, Rebecca Anderson, Vera Araujo-Soares, Janette Boadu, Martha Canfield, Lesley Foster, Paul McCrone, Myfanwy Morgan, Sam Norton, Kirby Sainsbury, John Weinman
المصدر: Programme Grants for Applied Research, Vol 12, Iss 03 (2024)
مصطلحات موضوعية: xeroderma pigmentosum, adherence, dosimeter, mixed methods, photoprotection, rare conditions, intervention mapping, dermatology, Public aspects of medicine, RA1-1270
وصف الملف: electronic resource
Relation: https://doaj.org/toc/2050-4330
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5دورية أكاديمية
المؤلفون: S R Ali, J Bryce, A L Priego-Zurita, M Cherenko, C Smythe, T M de Rooij, M Cools, T Danne, H Katugampola, O M Dekkers, O Hiort, A Linglart, I Netchine, A Nordenstrom, P Attila, L Persani, N Reisch, A Smyth, Z Sumnik, D Taruscio, W E Visser, A M Pereira, N M Appelman-Dijkstra, S F Ahmed
المصدر: Endocrine Connections, Vol 12, Iss 12, Pp 1-12 (2023)
مصطلحات موضوعية: registries, databases, rare conditions, rare diseases, european reference networks, endo-ern, Diseases of the endocrine glands. Clinical endocrinology, RC648-665
وصف الملف: electronic resource
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6دورية أكاديمية
المؤلفون: Holly Walton, Pei Li Ng, Amy Simpson, Lara Bloom, Lyn S. Chitty, Naomi J. Fulop, Amy Hunter, Jennifer Jones, Joe Kai, Larissa Kerecuk, Maria Kokocinska, Kerry Leeson-Beevers, Sharon Parkes, Angus I. G. Ramsay, Alastair Sutcliffe, Christine Taylor, Stephen Morris
المصدر: Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-22 (2023)
مصطلحات موضوعية: Rare conditions, Rare diseases, Care coordination, Survey, Care plan, Care coordinator, Medicine
وصف الملف: electronic resource
Relation: https://doaj.org/toc/1750-1172
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7دورية أكاديمية
المؤلفون: Walton, HollyAff1, IDs13023023029349_cor1, Ng, Pei Li, Simpson, AmyAff1, Aff2, Bloom, Lara, Chitty, Lyn S.Aff4, Aff5, Fulop, Naomi J., Hunter, Amy, Jones, Jennifer, Kai, Joe, Kerecuk, LarissaAff7, Aff8, Kokocinska, Maria, Leeson-Beevers, Kerry, Parkes, Sharon, Ramsay, Angus I. G., Sutcliffe, Alastair, Taylor, Christine, Morris, Stephen
المصدر: Orphanet Journal of Rare Diseases. 18(1)
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8دورية أكاديمية
المؤلفون: Paolo Gasparella, Simone O. Senica, Georg Singer, Chiara Banfi, Christina Flucher, Besiana P. Beqo, Holger Till, Emir Q. Haxhija
المصدر: Frontiers in Pediatrics, Vol 11 (2023)
مصطلحات موضوعية: vascular anomalies, health organization, rare conditions, patient journey, infantile hemangioma, Pediatrics, RJ1-570
وصف الملف: electronic resource
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9دورية أكاديمية
المؤلفون: Holly Walton, Amy Simpson, Angus I. G. Ramsay, Emma Hudson, Amy Hunter, Jennifer Jones, Pei Li Ng, Kerry Leeson-Beevers, Lara Bloom, Joe Kai, Larissa Kerecuk, Maria Kokocinska, Alastair G. Sutcliffe, Stephen Morris, Naomi J. Fulop
المصدر: Orphanet Journal of Rare Diseases, Vol 17, Iss 1, Pp 1-25 (2022)
مصطلحات موضوعية: Rare conditions, Rare diseases, Care coordination, Taxonomy, Qualitative, Health care organisation, Medicine
وصف الملف: electronic resource
Relation: https://doaj.org/toc/1750-1172
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10دورية أكاديمية
المؤلفون: Debra Smyth, Monica Hytiris, Coreen Kelday, Ciara McDonnell, Christine Burren, Adrian Gardner, Lisa Mills, Susan Parekh, Oliver Semler, Angela Stewart, Ingunn Westerheim, Muhammad Kassim Javaid, Patricia Osborne, S. Faisal Ahmed
المصدر: Frontiers in Public Health, Vol 10 (2023)
مصطلحات موضوعية: COVID-19, osteogenesis imperfecta (OI), pandemic, rare conditions, rare diseases, remote consultation, Public aspects of medicine, RA1-1270
وصف الملف: electronic resource