المؤلفون: Marie-Laure Armand, Charles Taieb, Aline Bourgeois, Mireille Bourlier, Mohammed Bennani, Christine Bodemer, Pierre Wolkenstein, along with the French national network on rare skin diseases (FIMARAD)

المصدر: Orphanet Journal of Rare Diseases, Vol 14, Iss 1, Pp 1-8 (2019)

مصطلحات موضوعية: Neurofibromatosis type 1, NF1, Von Recklinghausen’s disease, Individual disease burden, Quality of life, Questionnaire, Medicine

وصف الملف: electronic resource

Relation: http://link.springer.com/article/10.1186/s13023-019-1067-8; https://doaj.org/toc/1750-1172

URL الوصول: https://doaj.org/article/e2c8fd6b2aaf485b96b5afe88d31a425

المؤلفون: Fanny Morice-Picard, Charles Taïeb, Aurelie Marti, Antoine Gliksohn, Mohammed Bennani, Christine Bodemer, Khaled Ezzedine, Filière Maladies Rares en Dermatologie: FIMARAD

المصدر: Orphanet Journal of Rare Diseases, Vol 13, Iss 1, Pp 1-8 (2018)

مصطلحات موضوعية: Burden, Albinism, Real life, Quality of life, Medicine

وصف الملف: electronic resource

Relation: http://link.springer.com/article/10.1186/s13023-018-0894-3; https://doaj.org/toc/1750-1172

URL الوصول: https://doaj.org/article/7f3b698a8c6b4d489b9eab1375567f04

المؤلفون: Armand, Marie-Laure^Aff1, Taieb, Charles^Aff2, Bourgeois, Aline^Aff1, Bourlier, Mireille^Aff3, Bennani, Mohammed^Aff4, Bodemer, Christine^{Aff2, Aff5}, Wolkenstein, Pierre^Aff1, along with the French national network on rare skin diseases (FIMARAD)

المصدر: Orphanet Journal of Rare Diseases. 14(1)

المؤلفون: Morice-Picard, Fanny^Aff1, Taïeb, Charles^Aff2, Marti, Aurelie^Aff1, Gliksohn, Antoine^Aff3, Bennani, Mohammed^Aff4, Bodemer, Christine^{Aff5, Aff6}, Ezzedine, Khaled^{Aff7, Aff8}, Filière Maladies Rares en Dermatologie: FIMARAD

المصدر: Orphanet Journal of Rare Diseases. 13(1)

المؤلفون: Khaled Ezzedine, Antoine Gliksohn, Christine Bodemer, Fanny Morice-Picard, Charles Taieb, Aurélie Marti, Filière Maladies Rares en Dermatologie: Fimarad, Mohammed Bennani

المساهمون: CHU Bordeaux [Bordeaux], CHU Necker - Enfants Malades [AP-HP], Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP), Qualees Contract Research Organisation, Centre de référence national des Maladies Génétiques à Expression Cutanée - National Reference Center for Genodermatoses and Rare Skin Diseases (MAGEC), Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Groupe Hospitalier Saint Louis - Lariboisière - Fernand Widal [Paris], Hôpital Henri Mondor, Epidemiology in Dermatology and Evaluation in Therapeutics (EpiDermE), Université Paris-Est Créteil Val-de-Marne - Paris 12 (UPEC UP12)

المصدر: Orphanet Journal of Rare Diseases, Vol 13, Iss 1, Pp 1-8 (2018)
Orphanet Journal of Rare Diseases
Orphanet Journal of Rare Diseases, BioMed Central, 2018, 13 (1), pp.162. ⟨10.1186/s13023-018-0894-3⟩

مصطلحات موضوعية: 0301 basic medicine, Quality of life, Albinism, Real life, lcsh:Medicine, Burden, Linguistic validation, External validity, 030207 dermatology & venereal diseases, 03 medical and health sciences, 0302 clinical medicine, Cronbach's alpha, Surveys and Questionnaires, medicine, Humans, Pharmacology (medical), Workgroup, Genetics (clinical), Reliability (statistics), Principal Component Analysis, lcsh:R, General Medicine, medicine.disease, 030104 developmental biology, Scale (social sciences), Psychology, [SDV.MHEP.DERM]Life Sciences [q-bio]/Human health and pathology/Dermatology, Clinical psychology

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::c25fc20b4fbca8f87b1b9cee0ed8964c
http://link.springer.com/article/10.1186/s13023-018-0894-3

المؤلفون: Joly, Pascal, French study Group on auto immune bullous skin diseases, and the French network of rare diseases in Dermatology (FIMARAD)

المصدر: Journal of the American Academy of Dermatology; Feb2022, Vol. 86 Issue 2, p494-497, 4p

المؤلفون: Boccara, Olivia, Mazereeuw, Juliette, Martin, Ludovic, Bessis, Didier, Hubiche, Thomas, Chiaverini, Christine, Dompmartin, Anne, Mallet, Stéphanie, Miquel, Juliette, Aubert, Hélène, Puzenat, Eve, Abasq, Claire, Gusdorf, Laurence, Hadj-Rabia, Smail, Maruani, Annabel, Groupe de Recherche Clinique de Dermatologie Pédiatrique (GRDP,), Filière Maladies rares Dermatologiques (FIMARAD)

المصدر: Journal of the American Academy of Dermatology; Oct2022, Vol. 87 Issue 4, p914-916, 3p

المؤلفون: M. Godeau, Hélène Aubert, J. Malloizel, A. Bergeron, Christine Chiaverini, Juliette Mazereeuw-Hautier, C. Labreze, E. Casassa, Charles Taieb, Jason Shourick, Olivia Boccara, Isabelle Dreyfus, Fimarad, Annabel Maruani

المصدر: Annales de Dermatologie et de Vénéréologie. 147:A102

مصطلحات موضوعية: Dermatology

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_________::462afef58be902df2ec215e8d86db38c
https://doi.org/10.1016/j.annder.2020.09.056

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تسجيل الدخول للوصول الكامل.

المؤلفون: Bellon N; Dermatology Department, Necker-Enfants Malades Hospital, Expert Centre for Genodermatoses MAGEC-Necker, Filière Maladies Rares Dermatologiques (FIMARAD), APHP, Paris-Cité University, Paris, France. Electronic address: nathalia.bellon@aphp.fr., Bataille P; Dermatology Department, Necker-Enfants Malades Hospital, Expert Centre for Genodermatoses MAGEC-Necker, Filière Maladies Rares Dermatologiques (FIMARAD), APHP, Paris-Cité University, Paris, France., Bonigen J; Dermatology Department, Necker-Enfants Malades Hospital, Expert Centre for Genodermatoses MAGEC-Necker, Filière Maladies Rares Dermatologiques (FIMARAD), APHP, Paris-Cité University, Paris, France., Charbit-Henrion F; Genomic Medecine of Rare Diseases, Hôpital Necker-Enfants Malades, Assistance Publique-Hôpitaux de Paris, Paris, France., Dietrich C; Inserm UMR1151, CNRS UMR8253, Team Immunoregulation and Immunopathology, Université Paris Cité, Paris, France., Polivka L; Dermatology Department, Necker-Enfants Malades Hospital, Expert Centre for Genodermatoses MAGEC-Necker, Filière Maladies Rares Dermatologiques (FIMARAD), APHP, Paris-Cité University, Paris, France., Hadj-Rabia S; Dermatology Department, Necker-Enfants Malades Hospital, Expert Centre for Genodermatoses MAGEC-Necker, Filière Maladies Rares Dermatologiques (FIMARAD), APHP, Paris-Cité University, Paris, France., Leite de Moraes M; Inserm UMR1151, CNRS UMR8253, Team Immunoregulation and Immunopathology, Université Paris Cité, Paris, France., Bodemer C; Dermatology Department, Necker-Enfants Malades Hospital, Expert Centre for Genodermatoses MAGEC-Necker, Filière Maladies Rares Dermatologiques (FIMARAD), APHP, Paris-Cité University, Paris, France.

المصدر: Journal of the American Academy of Dermatology [J Am Acad Dermatol] 2024 Aug; Vol. 91 (2), pp. 373-376. Date of Electronic Publication: 2024 Apr 26.

نوع المنشور: Letter; Journal Article

بيانات الدورية: Publisher: Mosby Country of Publication: United States NLM ID: 7907132 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1097-6787 (Electronic) Linking ISSN: 01909622 NLM ISO Abbreviation: J Am Acad Dermatol Subsets: MEDLINE

مواضيع طبية MeSH: Antibodies, Monoclonal, Humanized*/therapeutic use , Epidermolysis Bullosa*/drug therapy , Epidermolysis Bullosa*/genetics, Humans ; Male ; Female ; Adult ; Middle Aged ; Young Adult ; Adolescent ; Treatment Outcome ; Child ; Child, Preschool