المؤلفون: Michael Schlander, Søren Holm, Erik Nord, Jeff Richardson, Silvio Garattini, Peter Kolominsky-Rabas, Deborah Marshall, Ulf Persson, Maarten Postma, Steven Simoens, Oriol de Solà Morales, Keith Tolley, Mondher Toumi, Harry Telser, James R Bonham, Helmut Hintner, Anja Diem, Martin Laimer, Réjean Hébert, Nabarun Dasgupta, Carrie E. Pierce, Melissa Jordan, Barbara Bori, Mohanad Fors, Emilie Prazakova, Simon Day, Thomas J. Croce, Jonas Fransson, Philip Wood, Anne-Grethe Lauridsen, Joanne Higgs, Vesna Stojmirova Aleksovska, Christina Olsen, Ritchie Head, Antonio Asero, Vincenzo Papa, Christa van Kan, Loic Favennec, Silvana Venturella, Michela Salvador, Alan Krol, Stephanie J. Nielsen, Birthe B. Holm, Daniel Lewi, Patricia Durão, Heather Band, Andrea West, Marinda J. A. Hammann, Marije C. Effing-Boele, Hanka K. Dekker, Amy Hunter, Amy Simpson, Gumei Liu, Katherine Needleman, Debra Lewis, Gayatri Rao, Martin J. Whitaker, Raquel Castro

المصدر: Orphanet Journal of Rare Diseases, Vol 11, Iss S1, Pp 1-9 (2016)

مصطلحات موضوعية: Adrenal Insufficiency, Epidermolysis Bullosa, Patient Organisation, Natural History Study, Acanthamoeba Keratitis, Medicine

وصف الملف: electronic resource

Relation: http://link.springer.com/article/10.1186/s13023-016-0515-y; https://doaj.org/toc/1750-1172

URL الوصول: https://doaj.org/article/e08ac2370ca64d8296b3c0c96288eec5

المؤلفون: Heather Band, Loïc Favennec, Philip Wood, Christina Olsen, Oriol de Solà Morales, Mondher Toumi, Keith Tolley, Raquel Castro, Martin Laimer, Ulf Persson, Anne-Grethe Lauridsen, Hanka Dekker, Amy Hunter, Helmut Hintner, Nabarun Dasgupta, Mohanad Fors, James R. Bonham, Katherine I. Miller Needleman, Marinda J. A. Hammann, Christa van Kan, Simon Day, Gumei Liu, Vesna Stojmirova Aleksovska, Thomas J. Croce, Barbara Bori, Antonio Asero, Marije C. Effing-Boele, Anja Diem, Birthe B Holm, Réjean Hébert, Andrea West, Peter Kolominsky-Rabas, Deborah A. Marshall, Silvana Venturella, Harry Telser, Martin J. Whitaker, Jonas Fransson, Michael Schlander, Vincenzo Papa, Carrie E. Pierce, Gayatri R. Rao, Maarten J. Postma, Steven Simoens, Amy Simpson, Patricia Durão, Daniel Lewi, Melissa Jordan, Stephanie J. Nielsen, Michela Salvador, Jeff Richardson, Søren Holm, Alan Krol, Debra Y. Lewis, Erik Nord, Silvio Garattini, Joanne Higgs, Emilie Prazakova, Ritchie Head

المصدر: Orphanet Journal of Rare Diseases. 11

مصطلحات موضوعية: 0301 basic medicine, education.field_of_study, Task force, Population, General Medicine, 3. Good health, Integrated care, Patient identification, Orphan drug, 03 medical and health sciences, 030104 developmental biology, 0302 clinical medicine, Pharmacology (medical), Social media, Sociology, Religious studies, education, Administration (government), 030217 neurology & neurosurgery, Genetics (clinical), Rare disease

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_________::579e3d4992475c1b375494c9e19b24ce
https://doi.org/10.1186/s13023-016-0515-y