The Foundation works closely with medical specialists who are among our Board of Directors and comprise our Medical Advisory Board, Honorary Medical Consultants and International Honorary Consultants. These specialists provide a liaison with the broader medical community to exchange information and resources regarding orphan disease in Hong Kong.
The Foundation provides funding for diagnostic testing for children who are suspected of having an orphan disease and whose families need financial support. The requirements are that the patient be below 19 years of age; the application be submitted by a licensed pediatrician registered in Hong Kong who is under the Hospital Authority or responsible for the patient; and the patient demonstrates financial need. Financial need is determined through an assessment from the medical social workers in the Hospital where the child is diagnosed. The process is outlined in the FAQs section. The application form can be found here.
We issue updates and information on orphan diseases via materials distributed to medical professionals and a regular newsletter emailed to subscribers. In cases where a pediatrician is seeking additional information in order to assess the situation of a patient, we may be able to provide useful information as well as access to medical specialists who may be able to offer assistance. Please contact us for further details.
We help organize and sponsor events dedicated to the exchange of information on orphan diseases among medical professionals, both locally and internationally, and in some cases also for the public. For example, we organized a Symposium on Orphan Diseases at the Hospital Authority in October 2008. For details on past and upcoming events, please go to News and Events.
INTERNATIONAL MEDICAL EXCHANGE
We plan to sponsor an educational program for a pediatrician based in Hong Kong to work with orphan disease specialists abroad for a period of time, in order to help bring international best practices back to the Hong Kong medical community. We also plan to sponsor programs for orphan disease specialists based abroad to visit Hong Kong in order to help train and educate locally based medical professionals in the identification and treatment of orphan diseases. Please contact us for further information
ORPHAN DISEASES REGISTRY
We support the establishment of a registry that will track aggregate orphan disease statistics in Hong Kong. Currently, no such database is available in the public domain. We aim to provide the community with a more complete understanding of the situation of orphan diseases in Hong Kong, including numbers of patients, types of diseases manifested, case studies and other data that may be useful in helping to better diagnose and manage such diseases in future.
Hong Kong currently lacks a dedicated laboratory facility for the research and diagnosis of many orphan diseases. We support the creation of a laboratory that will enable a greater proportion of diagnoses to be made without the need for more costly and time consuming overseas testing.