biostudies-literatureYu JNational High Level Hospital Clinical Research FundingChinese Academy of Medical Sciences Innovation Fund for Medical SciencesNational Key Research and Development Program of China4190https://www.ebi.ac.uk/biostudies/studies/S-EPMC12664264biostudies-literatureUnknown25(1)<h4>Background</h4>Rare diseases impose significant burden on families, particularly parents, of affected children, involving intensive caregiving, financial hardship, and social isolation. However, there is a scarcity of research exploring the broader dimensions of parental wellbeing, such as enjoyment and achievement. This study aims to assess the capability wellbeing among parents caring for children with rare diseases and to identify the contributing factors of parental wellbeing.<h4>Methods</h4>A nationwide cross-sectional survey was conducted on 10,207 parents of children diagnosed with 28 different rare diseases in China in 2019-2020. The survey collected disease-related factors of the children and socio-demographic and psychosocial factors of parents. The capability wellbeing of paBMC public healthCapability wellbeing of parents caring for children with rare diseases: a national cross-sectional study.PMC126642642022YFC27031002021-I2M-1-0032022-PUMCH-D-002 and 2022-PUMCH-B-098Dong DXu RHZhang HYu JChen SZhang SfalseCapability wellbeing of parents caring for children with rare diseases: a national cross-sectional study.<h4>Background</h4>Rare diseases impose significant burden on families, particularly parents, of affected children, involving intensive caregiving, financial hardship, and social isolation. However, there is a scarcity of research exploring the broader dimensions of parental wellbeing, such as enjoyment and achievement. This study aims to assess the capability wellbeing among parents caring for children with rare diseases and to identify the contributing factors of parental wellbeing.<h4>Methods</h4>A nationwide cross-sectional survey was conducted on 10,207 parents of children diagnosed with 28 different rare diseases in China in 2019-2020. The survey collected disease-related factors of the children and socio-demographic and psychosocial factors of parents. The capability wellbeing of pa2025-01-01T00:00:00Z2025 Nov2026-06-05T21:17:22.556Z2026-05-21T03:13:20.078ZS-EPMC126642644131607310.1186/s12889-025-25452-8