The recently conducted survey led by Professor Chan revealed that patients with rare diseases lacked sufficient understanding towards the patient registry scheme or engagement with it. Two public seminars, as a kick-start, will be organised to raise public’s awareness by dissecting the pathology, treatments, and concerns of those rare diseases. A voluntary team formed by students from various disciplines will then reach out to the patient groups to promote the scheme and disseminate appropriate health information.
It is hoped that with better understanding, the patient registry can be developed into a comprehensive one conducive to pathogenesis research and therapy development.
University Press Release