Study on Social Awareness and Patient Needs of the Rare Disease Epidermolysis Bullosa
This article primarily explores the current situation of the rare disease known as " Epidermolysis Bullosa," the challenges faced by patients, societal awareness, medical insurance conditions, and the status of public welfare activities. Patients face issues such as a shortage of specialized medical personnel, unclear diagnoses, susceptibility to discrimination, poor accessibility to medications, and lack of adequate support from the health care system. Through methods such as text analysis, interviews, and questionnaires, the study provides an in-depth analysis and proposes suggestions like enhancing societal awareness, improving medical insurance policies, and accelerating relevant scientific research to promote social attention and support for rare diseases treatment and improve the quality of life for patients with this disease, who are called “Butterfly Children” because their skin is as fragile as a butterfly's wings.
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