The Foundation is dedicated to raising awareness of orphan diseases as a public health issue among the general public in Hong Kong. We believe many of the myriad problems faced by the thousands of people affected by orphan diseases in our community can be improved through better attention to and funding for research, prevention and treatment, which in turn benefits the community as a whole.
We provide information on orphan diseases to the public via materials distributed in hospitals and clinics as well as a regular newsletter to subscribers. We also sponsor campaigns and events that are designed to improve public awareness of orphan diseases in Hong Kong, including conferences and events with patient groups and other organizations with similar objectives.
We promote the adoption of standard newborn screening tests in public hospitals in Hong Kong. There are dozens of rare genetic diseases that can today be detected through a series of basic diagnostic tests. When applied to newborns, they can help identify diseases early on, which can make an enormous difference in treatment options and outcomes. Given the often severe and life-threatening nature of such conditions once symptoms emerge – which can be at anytime from birth through the onset of adulthood – we believe is it critical to support efforts to detect and treat them as early as possible.
We support activities and initiatives which aim to improve the status of patients suffering from orphan diseases in Hong Kong in the longer term. These include providing a means of organizing and representing the orphan disease community; maintaining a channel of communication with policy makers; contributing to policy initiatives; and organizing events to raise orphan diseases as a public health issue.