المؤلفون: Zybarth, David, Brandt, Maja, Mundlos, Christine, Inhestern, Laura^{Aff1, IDs1302302302771w_cor4}

المصدر: Orphanet Journal of Rare Diseases. 18(1)

المؤلفون: Parker, Lisa^Aff18, Mintzes, Barbara^Aff18

المساهمون: Holm, Søren, Series Editor^Aff1, Rasmussen, Lisa M., Series Editor^Aff2, Engelhardt Jr., H. Tristram, Founding Editor^Aff3, Spicker, Stuart F., Founding Editor^Aff4, Agich, George, Editorial Board Member^Aff5, Baker, Bob, Editorial Board Member^Aff6, Bishop, Jeffrey, Editorial Board Member^Aff7, Borovecki, Ana, Editorial Board Member^Aff8, Fan, Ruiping, Editorial Board Member^Aff9, Garrafa, Volnei, Editorial Board Member^Aff10, Hester, D. Micah, Editorial Board Member^Aff11, Hofmann, Bjørn, Editorial Board Member^Aff12, Iltis, Ana, Editorial Board Member^Aff13, Lantos, John, Editorial Board Member^Aff14, Tollefsen, Chris, Editorial Board Member^Aff15, Voo, Dr Teck Chuan, Editorial Board Member^Aff16, Anderson, Emily E., editor^Aff17

المصدر: Ethical Issues in Community and Patient Stakeholder–Engaged Health Research. 146:153-169

المؤلفون: Cottin, Vincent^Aff5

المساهمون: Cottin, Vincent, editor^Aff1, Richeldi, Luca, editor^Aff2, Brown, Kevin, editor^Aff3, McCormack, Francis X., editor^Aff4

المصدر: Orphan Lung Diseases : A Clinical Guide to Rare Lung Disease. :3-10

المؤلفون: David Zybarth, Maja Brandt, Christine Mundlos, Laura Inhestern

المصدر: Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-8 (2023)

مصطلحات موضوعية: Rare disease, Healthcare, COVID-19, Sars-CoV-2, Patient organization, Medicine

وصف الملف: electronic resource

Relation: https://doaj.org/toc/1750-1172

URL الوصول: https://doaj.org/article/61a99151df744a2487150bfd7ae8ca44

المؤلفون: Andrew A. Dwyer, Ziwei Zeng, Christopher S. Lee

المصدر: Orphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-7 (2021)

مصطلحات موضوعية: Community based participatory research, Diagnostic odyssey, Hypogonadotropic hypogonadism, Kallmann syndrome, Patient organization, Rare disease, Medicine

وصف الملف: electronic resource

Relation: https://doaj.org/toc/1750-1172

URL الوصول: https://doaj.org/article/6627faee1b6e4c51a7500301c312bcbb

المؤلفون: Julie Raskin, Tai L. S. Pasquini, Sheila Bose, Dina Tallis, Jennifer Schmitt

المصدر: Frontiers in Endocrinology, Vol 13 (2022)

مصطلحات موضوعية: congenital hyperinsulinism, hypoglycemia, rare disease, burden of disease, challenges, patient organization, Diseases of the endocrine glands. Clinical endocrinology, RC648-665

وصف الملف: electronic resource

Relation: https://www.frontiersin.org/articles/10.3389/fendo.2022.886552/full; https://doaj.org/toc/1664-2392

URL الوصول: https://doaj.org/article/9102a53203c14675a5cf5c4a837ddc8f

المؤلفون: Dwyer, Andrew A.^{Aff1, Aff2}, Zeng, Ziwei, Lee, Christopher S.^{Aff1, Aff4}

المصدر: Orphanet Journal of Rare Diseases. 16(1)

المؤلفون: Schmiedeke, Eberhard K. H.^Aff1

المصدر: Pädiatrie & Pädologie: Österreichische Zeitschrift für Kinder- & Jugendheilkunde. 55(Suppl 3):108-113

المؤلفون: Rach C, Lukas J, Müller R, Sendler M, Simon P, Salloch S

المصدر: Patient Preference and Adherence, Vol Volume 14, Pp 587-597 (2020)

مصطلحات موضوعية: patient organization, drug research, patient and public involvement, systematic review of reasons, bioethics, Medicine (General), R5-920

وصف الملف: electronic resource

Relation: https://www.dovepress.com/involving-patient-groups-in-drug-research-a-systematic-review-of-reaso-peer-reviewed-article-PPA; https://doaj.org/toc/1177-889X

URL الوصول: https://doaj.org/article/bb581162a0384a5e9ada27c68b5e358a

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