A questionnaire-based study to comprehensively assess the status quo of rare disease patients and care-givers in China.

ABSTRACT:

Background

There are over 16.8 million rare disease patients in China, representing a large community that should not be neglected. While the public lack the awareness of their existence and difficult status quo, for one reason that they exist as a rare and special group in our society, for another reason that all sectors of the community haven't introduced and propagandized them suitably. However, as a special group with more difficulties in all aspects than normal healthy persons, they need enough care and love from us. To provide a basis for policy-makers to better understand the status quo of rare disease patients and care-givers in China and to devise some new policies to improve their quality of life, a comprehensive analysis of the status quo, unmet needs, difficulty caused

SUBMITTER: Li X 

PROVIDER: S-EPMC8296703 | biostudies-literature | 2021 Jul

REPOSITORIES: biostudies-literature