"WISH"ING TO IMPROVE QUALITY OF LIFE FOR CHILDREN WITH RARE DISEASES

被引:0
|
作者
Regier, Debra [2 ]
Mahaney, Leslie [1 ]
Mid-Atlantic, Make-A-Wish [1 ]
机构
[1] Make A Wish Midatlantic, Bethesda, MD USA
[2] Childrens Natl Med Ctr, Rare Dis Inst, Washington, DC 20010 USA
关键词
D O I
暂无
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
114
引用
收藏
页码:296 / 296
页数:1
相关论文
共 50 条
  • [21] Quality of life in children with psychosomatic functional diseases
    Briazqounov, IP
    Abalakova, MV
    Larkova, IA
    Koulakovskaya, JA
    [J]. JOURNAL OF PSYCHOSOMATIC RESEARCH, 2000, 48 (03) : 274 - 274
  • [22] Quality of Life for Children with Allergic Skin Diseases
    Hon, Kam Lun
    Chu, Samantha
    Leung, Alexander K. C.
    [J]. CURRENT PEDIATRIC REVIEWS, 2022, 18 (03) : 191 - 196
  • [23] Measuring parent proxy-reported quality of life of 11 rare diseases in children in Zhejiang, China
    Qisheng Gao
    Shanshan Wang
    Jianping Ren
    Xin Wen
    [J]. Health and Quality of Life Outcomes, 18
  • [24] Healthcare access, satisfaction, and health-related quality of life among children and adults with rare diseases
    Kathleen Bogart
    Amanda Hemmesch
    Erica Barnes
    Thomas Blissenbach
    Arthur Beisang
    Patti Engel
    [J]. Orphanet Journal of Rare Diseases, 17
  • [25] Healthcare access, satisfaction, and health-related quality of life among children and adults with rare diseases
    Bogart, Kathleen
    Hemmesch, Amanda
    Barnes, Erica
    Blissenbach, Thomas
    Beisang, Arthur
    Engel, Patti
    [J]. ORPHANET JOURNAL OF RARE DISEASES, 2022, 17 (01)
  • [26] Measuring parent proxy-reported quality of life of 11 rare diseases in children in Zhejiang, China
    Gao, Qisheng
    Wang, Shanshan
    Ren, Jianping
    Wen, Xin
    [J]. HEALTH AND QUALITY OF LIFE OUTCOMES, 2020, 18 (01)
  • [27] Autoinflammatory syndromes: rare diseases with important implications in quality of life
    Appenzeller, Simone
    Martini, Alberto
    [J]. REVISTA BRASILEIRA DE REUMATOLOGIA, 2016, 56 (01) : 1 - 1
  • [28] STUDY ON THE QUALITY OF LIFE OF SIBLINGS OF PEOPLE AFFECTED BY RARE DISEASES
    Martinez Hernandez, Elena
    Pastor Seller, Enrique
    [J]. PRISMA SOCIAL, 2022, (36): : 261 - 289
  • [29] Rare diseases with oral components: care course and quality of life
    Toupenay, S.
    Razanamihaja, N.
    Berdal, A.
    Boy-Lefevre, M-L.
    [J]. COMMUNITY DENTAL HEALTH, 2013, 30 (01) : 10 - 14
  • [30] Virtual reality to improve the quality of life in children with cancer
    Velasco-Hidalgo, Liliana
    Segura-Pacheco, Blanca
    Esparza-Silva, Ana L.
    Zapata-Torres, Marta
    Ortiz-Razo, Ana G.
    [J]. GACETA MEXICANA DE ONCOLOGIA, 2021, 20 (02): : 79 - 83