The Foundation seeks to improve the overall welfare of children with orphan diseases in Hong Kong by providing a source of information and resources related to diagnosis, care and treatment for patients and their families. Please contact us for further information.
The Foundation can help find and provide information on specific types of orphan diseases; provide contact details for related organizations in Hong Kong and abroad; provide copies of certain publicly available research papers and reports; and help provide access to support organizations and medical specialists. We also issue updates and information on orphan diseases via our regular newsletter emailed to subscribers.
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 responsible for the patient and is working under the Hospital Authority; and the patient demonstrate financial need. Financial need is determined through an assessment comparable to that of other charitable donations in Hong Kong. The process is outlined in the FAQs section.
We are establishing a program that will provide for periodic home care for children with orphan diseases that need constant care. The program aims to provide some free time for caregivers who are family members without substantial outside support. Such caregivers often struggle with enormous mental and physical stress in the process of caring for a child with an orphan disease and at times need a break to care for themselves.
We help organize and sponsor events aimed at educating medical professionals, patients and their families on orphan diseases and enabling their access to the medical community. For example, we organized a Symposium on Orphan Diseases at the Hospital Authority in October 2008, which included presentations from leading pediatric and rare disease specialists in Hong Kong and abroad. For details on past and upcoming events, please go to News and Events.
We organize events for patients and their families to learn and exchange information on orphan diseases, often in cooperation with existing patient support groups. Simply sharing experiences with other families in similar situations can provide much needed emotional support and help alleviate the common feeling of being alone.
We provide access to counsellors trained in helping individuals cope with the stresses of orphan diseases. This can be useful for patients and family members as well as individuals who know they are carriers for rare genetic diseases that may be passed on to their children.