Fig. 1

Proportion of patient needs and financial support that respondents have received. Knowledge popularization: Such as timely understanding of the disease related medical care knowledge and policy information guidance, to assist in the development of disease course planning. Social care support: Such as implement the policy of subsidizing nursing fees and reducing the fees charged by professional nursing institutions. Emotional support: Such as activities, mutual talks and encouragements between patients' organizations. Social acceptance: Such as popularizing the knowledge of rare bone diseases to the public so as to gain the acceptance and respect of patients with rare bone diseases and reducing discrimination. Healthcare support: Such as increasing subsidies for medical expenses, formulating a scientific and effective treatment plan