The challenges of storytelling in rare diseases

被引：0
|
作者：
Gross, Olivia [1 ]
机构：
[1] Univ Sorbonne Paris Nord, Chaire Rech Engagement Patients, LEPS, UR 3412,UFR Sante Med & Biol Humaine, Paris, France
来源：
SANTE PUBLIQUE | 2021年 / 33卷 / 03期
关键词：
D O I：
10.3917/spub.213.0309
中图分类号：
R1 [预防医学、卫生学];
学科分类号：
1004 ; 120402 ;
摘要：
引用
收藏
页码：309 / 310
页数：2
相关论文
共 50 条
  • [41] CHALLENGES IN THE ESTIMATION OF BIRTH PREVALENCE FOR RARE DISEASES: A CASE STUDY
    Osenenko, K.
    Deighton, A.
    Szabo, S.
    VALUE IN HEALTH, 2021, 24 : S203 - S203
  • [42] Developing interactions with industry in rare diseases: lessonslearned and continuing challenges
    Berry, Susan A.
    Coughlin, Curtis R., II
    McCndaless, Shawn
    McCarter, Robert
    Seminara, Jennifer
    Yudkoff, Mark
    LeMons, Cynthia
    GENETICS IN MEDICINE, 2020, 22 (01) : 219 - 226
  • [43] Therapies for rare diseases: therapeutic modalities, progress and challenges ahead
    Tambuyzer, Erik
    Vandendriessche, Benjamin
    Austin, Christopher P.
    Brooks, Philip J.
    Larsson, Kristina
    Needleman, Katherine I. Miller
    Valentine, James
    Davies, Kay
    Groft, Stephen C.
    Preti, Robert
    Oprea, Tudor I.
    Prunotto, Marco
    NATURE REVIEWS DRUG DISCOVERY, 2020, 19 (02) : 93 - 111
  • [44] Epidemiologische Herausforderungen bei seltenen KrankheitenEpidemiologic challenges in rare diseases
    S. Rückinger
    A. Boneberger
    Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz, 2008, 51 (5) : 483 - 490
  • [45] CHALLENGES IN RARE DISEASES AND THE CASE FOR OPTIMISM IN IBM: AN MSG STUDY
    Needham, M.
    Badrising, U.
    Benveniste, O.
    Beer, K.
    Heim, A.
    Dimachkie, M. M.
    CLINICAL AND EXPERIMENTAL RHEUMATOLOGY, 2023, 41 (02) : 502 - 502
  • [46] Challenges and opportunities for discovering the biology of rare genetic diseases of the brain
    Padinjat Raghu
    Yojet Sharma
    Aswathy Bhuvanendran Nair Suseela Devi
    Harini Krishnan
    Journal of Biosciences, 49
  • [47] Designing clinical trials for rare diseases: unique challenges and opportunities
    Pizzamiglio, Chiara
    Vernon, Hilary J.
    Hanna, Michael G.
    Pitceathly, Robert D. S.
    NATURE REVIEWS METHODS PRIMERS, 2022, 2 (01):
  • [48] Challenges in developing therapies for rare diseases including pachyonychia congenita
    Kaspar, RL
    JOURNAL OF INVESTIGATIVE DERMATOLOGY SYMPOSIUM PROCEEDINGS, 2005, 10 (01) : 62 - 66
  • [49] Research on rare diseases: ten years of progress and challenges at IRDiRC
    Lucia Monaco
    Galliano Zanello
    Gareth Baynam
    Anneliene H. Jonker
    Daria Julkowska
    Adam L. Hartman
    Daniel O’Connor
    Chiuhui Mary Wang
    Durhane Wong-Rieger
    David A. Pearce
    Nature Reviews Drug Discovery, 2022, 21 : 319 - 320
  • [50] Challenges of transition to adult health services for patients with rare diseases
    Zurynski, Yvonne A.
    Elliott, Elizabeth J.
    MEDICAL JOURNAL OF AUSTRALIA, 2013, 198 (11) : 575 - 576
12345