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Vulnerable Populations in Health Research (349) Cross-Sectional Studies in Public Health (1284) Descriptive Epidemiology and Population Size Estimates (231) Asian Health Disparities (20)

Published on in Vol 10 (2024)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/57353, first published .
Teenage boy with crutches wearing a "Devner 15" basketball jersey

Patterns of the Health and Economic Burden of 33 Rare Diseases in China: Nationwide Web-Based Study

Patterns of the Health and Economic Burden of 33 Rare Diseases in China: Nationwide Web-Based Study

Authors of this article:

Jiazhou Yu1 Author Orcid Image ;   Shanquan Chen2 Author Orcid Image ;   Huanyu Zhang3, 4 Author Orcid Image ;   Shuyang Zhang5 Author Orcid Image ;   Dong Dong1, 3 Author Orcid Image
Article Authors Cited by (12) Tweetations Metrics

Journals

  1. Zhao Y, Ding S, Lin C, Han Y, Zhao M. Experiences of Family Members and Patients with Spinal Muscular Atrophy Under the Multi-Level Medical Security System in Shaanxi Province, China: A Mixed Study. Healthcare 2025;13(2):140 View
  2. Zhao M, Ding S, Zhao Y, Lin C, Han Y. Healthcare Resource Utilization, Economic Burden, and Multi-Level Medical Security System for Individuals with Spinal Muscular Atrophy in Shaanxi Province, China. Healthcare 2025;13(4):428 View
  3. Yu J, Zhang H, Chen S, Xu R, Zhang S, Dong D. Health-related Quality of Life among Children Living with Rare Diseases in China: a Nationwide Study. Applied Research in Quality of Life 2026;21(3):1127 View
  4. Yu J, Zhang H, Chen S, Xu R, Zhang S, Dong D. Capability wellbeing of parents caring for children with rare diseases: a national cross-sectional study. BMC Public Health 2025;25(1) View
  5. Lu Q, Shen Q, Wan X, Hu J, Zheng X. Parents' Experiences and Needs in Home Nutritional Management of Children With Short Bowel Syndrome: A Qualitative Study. Child: Care, Health and Development 2026;52(1) View
  6. Walkowiak D, Pospieszyńska-Martysiuk K, Dianow H, Węgrzyn J, Domaradzki J. Measuring economic burden in families of individuals with Angelman Syndrome in Poland: a caregivers’ survey. Orphanet Journal of Rare Diseases 2025;21(1) View
  7. Zhao Y, Zhang X, He D, Li Y, Dong R, Gu Y, Xie J. How to evaluate rare disease policy effectiveness based on policy modeling consistency (PMC) index model: A quantitative assessment of policy implementation in China. Intractable & Rare Diseases Research 2026;15(1):54 View
  8. Dayimu N, Leng L, Kuerbanniyazi G, Lin X. Loneliness and parental caregiving burden in families of children with Prader-Willi syndrome in China: the moderating effects of family functioning and socioeconomic status. Frontiers in Psychology 2026;17 View
  9. Wu Y, Chen J, Shao J, Peng H, Li L, Chen G, Li S. What Drives Public Preference for Rare Drugs Coverage in China? Insights From a Multi‐Center Discrete Choice Experiment. Health Expectations 2026;29(4) View
  10. Quan G, Zhou Y, Liu Y, Wu Y, Yan Y. Reconceiving orphan drug market exclusivity as a conditional public-law entitlement: a sustainable regulatory governance model with comparative lessons for China. Frontiers in Medicine 2026;13 View

Books/Policy Documents

  1. Parvizi M, Hekmat M, Jafferany M, Junaid M. Handbook of the Behavior and Psychology of Disease. View
  2. Parvizi M, Hekmat M, Jafferany M, Junaid M. Handbook of the Behavior and Psychology of Disease. View